Feel Awful!!!

Hello- I am new to cpap use and have tried 2 different masks already just in my first month. I cannot seem to get a good seal on any of them. I am using a Resmed Mirage Liberty right now but have also tried the Mirage FF mask. I still feel horrible and cannot seem to understand why. I have felt a tiny bit lightheaded since starting cpap use and my body feels like I have the flu some days. I thought I was supposed to feel better with this thing not worse!! What am i doing wrong. I use the humidifier on my Resmed machine and set it on 3; my pressure ramps up starting at 6 and gets to 12 after 45 min. I always seem to sleep with my mouth open no matter what mask I use and I am still having events when I sleep on my back which is the primary position I sleep in. If I sleep on my side I often feel like the mask is not "on" properly and it begins to leak, also I have bursitis and cannot sleep on my side all night. My doc suggested a wedge pillow but I still could not sleep on my side all night no matter what I use. Why did my doc not set my pressure higher so I would not have events while sleeping in any position? Some days I feel so tired and bad that I just feel like crying and giving up. I am sooooo tired of feeling like crap!! Ieven tried taping my mouth shut last night to see if that helped but I couldn't go all night with it on(about 2 hrs.)because it just felt too uncomfortable. What should I do-I know I have just gotten started at this but I am so anxious to begin to feel just a little better. Any advice and wisdom would be greatly appreciated. Thanks!!!

Welcome to the forum!

You've come to the right place for help. I know it seems pretty bleak right now but I hope you'll find that there is lots of help here and I've seen a number of people get through the worst of it and go on to feel much better.

A couple of things up front ... and others will add to my post, I'm sure.

Please fill in your equipment on your profile so we can quickly see what you're using. It does help that you've noted a few things about your equipment in the post.

Most important, please don't give up! Some people may feel better fairly quickly, for others it can take several months.

As you've already discovered, masks are the most difficult part of CPAP therapy for many of us. Both nasal and full-face masks each have their own drawbacks and there is no such thing as the "perfect" mask for everyone (not yet, anyway). There are many posts on this forum covering mask leaks and various very creative solutions. Like the masks themselves, most solutions don't work for everyone so you need to *keep trying*.

The easiest way to search this forum is using google - as follows:

example, if you used the Swift II mask and had sore ears, I'd type in the following search:

swift "sore ears" site:cpaptalk.com

Also, click on the yellow lightbulb for our "Collective Wisdom". The more specific the question you ask the better the probability of a useful answer. Note, though, that we do all try to keep our collective spirits up. When you do hang in and start feeling better, you'll probably never even want to stop this therapy.

Also try to watch the threads - even if you can check once a day, you will pick up some very useful info.

Finally just a short note on increasing pressure: higher is not always better! Others know more about that one ... but I've experienced that one for myself.

Best of luck!
Mindy

I'll let other elaborate, but here's my quick drive-by comment...

grumpygirl wrote:I always seem to sleep with my mouth open no matter what mask I use...

In your whole post, this is the one thing that jumped out at me. Regardless of what else you do no matter what you've got to solve that problem. You're not going to get any therapy if your mouth is open.

Doug.

Grumpy Girl,
I felt really really bad after starting CPAP and I know now after 20 months on the machine that:
1. You must keep the pressure generated by tha machine and regukated by it and the mask enclosed within your airway. Mouth leaking ruins the therapy.
2. The full awakenings caused by mask leaks and pressure on your face cause much more effect on you mental awakness than the partial wakening of apnea ever did. But once you get things under control, the improvement will be dramatic.

The Dr. probably got the pressure right but only if you stop the mouth leakage and mask leaks so the pressure can work.

Keep reading, keep working, keep adjusting.

Good luck
TerryB

http://smart-sleep-apnea.blogspot.com/2 ... apnea.html

Great article, especially the last paragraph. Keep on trying, and trying new things. Have you tried a chinstrap yet?

Hang in there, grumpygirl! Most of us have been through these rough times when we started. Stay with this forum--there are so many things you can do to make your apnea therapy work. It just takes time, good information (that's available here!) and perseverance. Once you get these kinks worked out, you'll change your name to "restedgirl."

GrumpyGirl Welcome, I am sorry to hear you are having such a rough start. I was exactly the same way you we're and it seems like it took about 2 months for me to FINALLY start feeling good. I had tried 6 masks in 4 months now and I keep going back to my Swift 11. I wonder if you set your Humidifier on 1 or 2 if that will help, also what everyone above posted will help you to, you really need to make sure your mask isn't leaking, that will make you feel lightheaded and kind of dizzy headed and just not have the energy you used to so keep working on it and time and work will cure all. Goodluck

Welcome grumpygirl -- you have found the right place for info and help.
Others have already suggested the light bulb (collective wisdom) and the question mark (cpap faq) at the top of the pages.......

Mouth breathing. You say you're using the Mirage Liberty - If I'm not mistaken that is like the Hybrid in that it has nasal pillows and a full mouth cover. If you can get that to seal that will help with the mouth breathing as it won't let mouth leaks adversely affect your treatment. What issues are you having with the Full Face masks not sealing?? Are they too big?? Too small??

There are some here that do mouth taping to keep their mouths closed and there are some that will argue that is not very smart. I think if it works, do it!!! -- I have a beard and mustache so it's not something I prefer to do.....I don't need to trim by ripping it out by the roots!!! You can try taping along with a chinstrap to hold your chin from dropping when you relax.

There are others that use poligrip denture adhesive. I've tried that and it seems to work pretty well. I don't mouth breathe, so it hasn't really been a big issue, but I did the polident to do a mouth leak test due to leak statistics on my reports. What I found worked for me was cut the strip diagonally. When you wet your lips to apply, put on the bottom first with the narrow part of the "triangle" towards the middle. After the bottoms are on then close your mouth over the strips and wait for them to "dissolve" and do their hold.....You may experience cheek puffing and I'll have to let others advise you on that, cuz I ain't gotta clue!!!!

It sounds like your DME is "in bed with" Resmed. That's fine, but don't limit your mask choices to that manufacturer only!!!! There are many masks out there to try -- if you have a good DME they'll let you try a bunch before you have to decide....but that may not be possible. Your sleep center is an alternative to see if they'll allow you to try various masks until you find one that is comfortable and seals for you -- also the folks at the sleep center may be able to assist in the fit
After reading a lot of posts and info here I chose a specific mask based on others use and it turns out that it really works for me. Always keep in mind, that what works for some folks may not work at all for you. Masks are the Holy Grail of xPAP -- once you find a good one, you'll rest well and never want to give it up!!!!

The best advice you'll get here and you've already heard it at least once is Do not give up!!! We've all been through the mill, so you're not alone!!!! It can be fixed -- it just takes persistence and some time. You'll get it!!!

Good luck -- Take care
cheers
goose

Welcome, grumpygirl.
The masks you're using - a full face and and the Liberty take mouth breathing into account - I wouldn't worry about that at this point. Mouth breathing is a problem only when we use masks that don't cover our mouth.

You're not doing anything wrong. You're into a new process that is very difficult in the beginning for some of us.

Mask comfort is crucial.

Have you tried routing the hose from above? That was one of the first tips I got on a forum: use a hair scrunchy connected to a hook in the wall, and pass the hose through that. It lets the mask seal to my face much better.

Another tip people found useful is using Mack's silicone ear plugs to create a soft seal between the mask and your face - you roll one into a snake, pat it and actually use it like silicone putty.

And you may also want to look into pillows that can accommodate your mask better than regular pillows. There are special pillows for cpapers and people have also been happy with "shapeable" pillows.

You may want/need to try other masks: the Hybrid has the same principle as the Liberty, but the shape may fit you better. The are other full face masks as well. Mask that cover you nose may be necessary if you can't breathe through your nose at all.

Nasal masks and nasal pillows masks are an option if you can breathe through you nose, but sometimes don't. That's when we resort to different techniques of attempting to seal our mouths.

Hang in there, and come back here to tell us what you've tried, what helped and what failed. Most of us got here because the beginning wasn't that smooth. You'll have a few rough weeks - but it will get better, and it will be worth it.

O.