3wks of CPAP.. now feeling worse!!!

napagirl · Post by **napagirl** » Sun Mar 04, 2007 3:20 pm

Hi there,

I started my CPAP 3wks ago for the first time. My rx is for 9cm/h2o, but I so far can only tolerate 6.5-7.

The first few nights on the CPAP were like heaven. I slept like the dead since I was so sleep-deprived... didn't even hear the phone ringing!! And I felt great.

But now I am having problems. I am still not tired during the day anymore, which is great! But I wake up so sore with upper back/neck spasms, and I am in pain all day. Motrin isn't helping. Also, I am waking up, usually a few hours into falling asleep, and I have ripped the mask off and it's on the floor. I put it back on, and it stays on all night.

So my biggest problem is the muscle aches upon waking, and also, lately, a feeling of sweating inside my mask which makes me want to rip it off. I have a full face mask since I have sinus problems.

Does anyone have any suggestions??

Thanks!

TGregg · Post by **TGregg** » Sun Mar 04, 2007 3:30 pm

By curious coincidence, I too am wrapping up my third week tonight, and I run 9.2 cmH2O. My first night was the best so far. Then I had to get used to everything.

I also wake up a little achey since starting treatment. I think it's because I tossed and turned so much during my preCPAP days that my muscles never got a real chance for an extended rest. Now they do, and so this morning stiffness is something I have to get used to.

You too may have changed your sleeping style, you might sleep on your back now for instance. One way to prevent back pain is to walk every day. If I go for a few weeks w/o walking, my back starts to hurt. After doing that twice, I think I've finally learned to get some walking in.

Seems like a lot of success on therapy of this nature is determined by the patients figuring out what works best for them. Perhaps a different machine with CFLEX or EPR. Maybe a ramp where pressure starts out lower and ramps up to your presribed pressure after some time, which allows you to fall asleep, then slowly increases pressure. Perhaps APAP would help you out.

There's plenty to learn and consider.

TGregg · Post by **TGregg** » Sun Mar 04, 2007 3:34 pm

Ahhh, I see from your profile that your machine does have CFLEX and ramp. I'd try both of those. I'm sure folks here can direct you to the settings, if you wish.

rested gal · Post by **rested gal** » Sun Mar 04, 2007 3:41 pm

Just a wild guess... I think you're probably subconsciously trying to hold your head and neck still (and perhaps in an awkward position) all night, to accomodate the bulky full face mask. Perhaps because it springs leaks if you move or turn. And perhaps because (if you sleep on your side) the mask might be pressing into your face uncomfortably unless you keep your head "just so" or are trying to keep your face hanging off the edge of a pillow. Whatever you're doing to try to minimize discomfort or leakiness with the mask, I'd bet you are practically freezing into a strained head/neck position.

I don't know what sinus problems you have, but if you can breathe at all through at least one nostril all night, I'd switch to a nasal pillows mask (like the Twilight NP) and do whatever it takes (I tape my mouth) to prevent mouth breathing/mouth air leaks.

Or...if there is complete nasal blockage, I'd find a really good ENT to deal surgically with the sinus issues so that I could get away from a Full Face mask and try other types of masks that might let me sleep with my head/face in more natural positions.

Glad to hear you've got a more "awake" feeling in the day, but very sorry to hear about the pain. If you can get the sinus problem solved to the point you can use other kinds of masks, I think that will be the final big piece of the puzzle that needs to get put in place for "good treatment." Good luck!

Linda3032 · Post by **Linda3032** » Sun Mar 04, 2007 3:55 pm

Regarding the sweating inside the mask, you might try turning your heated humidifier down.

So you are wearing a full face mask, who determined that you needed it? And, have you ever tried a nasal mask or nasal pillows?

New cpap users shouldn't "assume" that they are or aren't mouth breathers. Many say they have trained themselves to not mouth breathe. And some (me for one) were mouth breathers prior to cpap, but not mouth breathers after cpap. So, I think you owe it to yourself to try a different mask -- if you haven't already.

I agree with RG, I think you are sleeping in a different position and your muscles are fighting against it. Also, some people have said they hurt because they are sleeping so deeply that they are no longer changing position during the night.

svh · Post by **svh** » Sun Mar 04, 2007 3:58 pm

I agree--I always breathed through my mouth before CPAP, since I didn't feel like I got enough air through just my nose. However, w/ CPAP, the air is forced in such that I have plenty (pressure 8.5) and feel no need to mouth breath.

napagirl · Post by **napagirl** » Sun Mar 04, 2007 4:19 pm

Thanks to everyone for responding.

I think the reason I went with the full face is because my nose is stuffy a lot. I have already had sinus surgery and won't ever have it again
Also, when I did my home sleep study, the nasal mask was so bizarre... it felt like a wind tunnel going through my head, and whenever I would open my mouth to cough or whatever, the air would blow out my mouth!! I did read about taping here... I can just see my husband's face on that one! But it may be necessary.

I walk everyday 45minutes, eat healthy, but this neck/upper back thing is a constant. I agree that I am probably holding my neck in a weird position when on my side, and I get leaks.

I have C-flex set to 1, and humidifier set to 1.5. I think I'm gonna order a nasal mask, just to have one to switch off to.

Any suggestions for nasal masks/pillows for best comfort????

Thanks!!!!

Linda3032 · Post by **Linda3032** » Sun Mar 04, 2007 4:22 pm

Napagirl, if there were only 100 masks, people would recommend 101 of them. ...

Here is a link to read (more than you ever wanted to know):

viewtopic.php?p=35286

Slinky · Post by **Slinky** » Sun Mar 04, 2007 5:03 pm

You might consider the Respironics ComfortLite 2. It kind of offers you the best of two worlds starting out as it comes w/the 2 sizes of nasal pillows and two sizes of a nasal cushion. The CL2 also has several areas of adjustment for fit besides just the headgear. Its a popular mask that seems to work well for many. I started out w/the CL2 nasal pillows but once I switched to the nasal cushion I found I liked it even better despite another nasal mask I'd tried causing a bruised bridge of the nose. Your DME likely has a CL2 in stock for you to try since it is so popular and not as expensive as many masks plus offering the two options in one package: pillows or cushion.

Craig-Tx · Post by **Craig-Tx** » Sun Mar 04, 2007 5:18 pm

napagirl wrote: I think the reason I went with the full face is because my nose is stuffy a lot.

It might be a good idea to try a nasal mask if possible. Pre-CPAP, I always slept on my side, and my nose would always end up completely clogged up. So I usually slept by breathing through my mouth.

Now that I am on CPAP, my nose may only get a little stuffed up (usually on only one side.) As it turns out I luckily have no problems with mouth breathing (knock on some form of simulated wood.) Now I sleep without problems, breathing through my nose.

I believe on one night my first week, I woke up in the middle of the night and my mouth was wide open... but, my tongue (or something) was blocking the airway to my mouth. leaving my nose and airway perfectly pressurized.

Yes, it is a bit unusual at first when you open you mouth to cough or [try to] speak. But you get used to it. Over time I even hear of people who can speak quite well while pressurized.

Good luck.

Slinky · Post by **Slinky** » Sun Mar 04, 2007 5:28 pm

Another observation: if I'm gonna have a stuffy nose at all it is going to be the right side. Some deviation of the septum but nothing I would even consider surgery for.

Surprisingly I've found that even if that right sinus and nasal passage are stuffy when I don my PAP as long as I have sufficient humidification the stuffiness CLEARS UP!

I've had some problems w/my integrated humidifier not being able to provide sufficient humidification w/the really cold weather and high winds keeping the furnace running a lot and drying out the house air. But a used stand alone HC 100 heated humidifier in place of the integrated humidifier solved the problem easily. We weren't sure if it was due to the PAP or if I had started w/a doozy of a sinus infection when the integrated humidifer couldn't keep up. Immediately w/sufficient humidity for my PAP my stuffy nose and sinus cleared right up, like w/in minutes I was breathing thru them.

JZ · Post by JZ » Sun Mar 04, 2007 6:58 pm

napagirl,

If you are stiff and achy from holding your head and neck at weird and uncomfortable angles, then your experience is like mine. But my muscle cramping, stiffness and pain was in my jaw muscles. I think it came from side sleeping and holding my head funny on the bed pillow to try to keep the headgear from moving.

What a bummer! I am just coming out of almost 5 months of jaw pain. It started resolving about two weeks ago, and that was after changing to a different nasal pillow (from Swift to CL2), getting a different bed pillow, having my nightime biteguard adjusted, going to a chiropractor and a dentist, and taking different meds to try to get the muscles to relax.

Not saying all that to scare you. Rather to say, start immediately to try different things. Different mask or nasal pillow, different bed pillow, talk to your doctor, go to a chiropractor if you think that might help, or get a massage. You will find a way to work through it. Learn some neck and back muscle stretching exercises.

Good luck to you. I am hoping you feel better soon and can enjoy feeling more rested.

flygal6 · Post by **flygal6** » Sun Mar 04, 2007 7:35 pm

I agree with Rested Gal, Linda and Slinky. I'm 4 months into this now, started with FF mask too. Suffered through first 3 months with leaks and stiff neck probably due to much of what has been mentioned here. The head gear strapped behind the neck was a killer for me, leaving me stiff and sore and feeling like I had been in Military attention all night with my chin tucked in. I also originally believed I had become a mouth breather over the years, but actually that was only happening due to gasping for air from the OSA. I like Slinky love my CL2. Its the best for side sleeping and no problems maintaining a seal. I use the simple cushion (like a small nasal mask) which I find more comfortable. This option is not as noisy and doesn't feel quite as much like a wind tunnel up your nose. But like was mentioned when you buy you have an option of getting 2of the 3 interfaces offered for the mask. (2 come with the purchase) The nasal pillows are nice and soft and easy to seal....I'm just not a pillow person. Don't like the sensation of the nares blocked.
Using enough humidification is also key. At the start I was running a room humidifier in the bedroom during the winter. Now I don't need the room one, just what's on the machine. Also consider a PAPpillow or memory foam pillow. The mask just melts into these easily without breaking the seal.
I too also believed in the beginning I would not be able, due to stuffiness, to tolerate and be successful with a nasal interface....but I was wrong. The stuffiness cleared up with the proper humidification. Now that I'm getting enough air, my mouth isn't flying open at all....no straps or tapes or anything. It all just disappeared with proper treatment.
You will find people here spend lots of time tweaking their systems, their settings and their equipment all in the name of comfort and good results. Make one change at a time, try it and then the next if necessary. I actually slept 9 hrs friday night, uninterrupted and no bathroom breaks. I haven't had that in years. The middle of the night bathroom runs also have stopped.
There is hope.....just stick with it. Bring your problem and questions here....there are great folks here ready to help!
Carol

ZZZzzz · Post by **ZZZzzz** » Sun Mar 04, 2007 7:37 pm

I don't want to discourage you..but, it took me 66 nights to sleep SIX HOURS in a row.

I had and still have very achy and sore muscles. The nurse said to give it three to four months now that I have good numbers (AHI below 5.00/no leaks etc...)

Good luck and we'll be here to help you***

-Bev

napagirl · Post by **napagirl** » Sun Mar 04, 2007 8:58 pm

Thanks all again for great replies!

JZ- I see a chiropractor... as a matter of fact, I think I financed his new Jaguar! I also get massage therapy on lunch hour once a week at work. Everything feels great for a day and then BAM... back to the pain. It is only on one side. I think I may have developed a pinched nerve with this darned CPAP.

Thanks for the recommendations on nasal masks. I will research this. My insurance has not been cooperative, so I purchased my own CPAP and mask... meaning, I am doing this without the help of DME companies. I will do my homework on the nasal mask.

I do have to say that I have found my nose less stuffy since being on CPAP. Perhaps it is the filtered air?

Thanks!

Napagirl

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