CPAP Side Effects Getting Worse

Hey everyone. My issues with CPAP have been increasing steadily over the months since I began therapy in April. I first started CPAP with a nasal mask at a flat 20cm of pressure and that was just about completely impossible to sustain due to me being a mouth breather. After talking to my DME and provider, I finally got a setting dialed in of 15-20 on my machine and switched to a FFM which honestly made the therapy feel like a dream compared to what it had been.

Then about a month after switching to the FFM the issues started cropping up one by one. At first I slept like the dead with this thing on, I actually woke up stiff from not moving. Slowly but surely I began to move more at night causing the mask to slip around on my face(I clean it and my face nightly). I've woken up a few times with the bottom of the mask in my mouth! As you can imagine this caused the mask to leak even more than it did by default and simultaneously mouth breathing seemed to suddenly get much worse. This has lead to severe issues with dry mouth that have been an almost literal plague upon my therapy. I've been trying to counteract it using XyliMelts which have been doing an okay job, but the problem persists due to the mouth breathing. I will be upgrading my chin strap soon in order to fight this problem.

The issue that has really sparked me to want to get some additional opinions has been two fold. First, my tongue seems to be pressing against my teeth, causing major irritation on the tip of it. And second my bottom lip has suddenly began to swell at night as of the last two days. The second I stop therapy in the morning the swelling slowly comes down over the next hour or two but it is extremely annoying and a bit unsettling in the mean time. Not to mention has me waking up with fish lips, which isn't exactly good for the job I have to be at within an hour of waking up. I don't have Herpes either lol. My DME and provider have been utterly unhelpful, once an issue deviates from the standard they seem to have zero idea what to do.


Any thoughts on all of this would be greatly appreciated!

Yes. get a different size of that mask, a different mask altogether (there are very, very many types available - see Cpap.com for info) amd remember to always try on full face masks lying down because your face changes a lot when you do that. Most of us went through a fair number of masks when starting out as everyone's face is different, so be patient and ask any questions you have in this thread. It would be interesting to know the results of your sleep study as your settings are very high.

Thanks for the quick reply.

To answer your question, my sleep study revealed that my AHI was around 130, bad enough that my treatment had to be expedited and I have become something of a legend at both my provider and DME.

Interestingly enough I plan to size down on the mask here in the next couple of days. It's just this damn swollen lip thing that is really bothering me. I'll report back how that goes once it's in place.

Actually that may not be about the mask but a fairly common allergic reaction... whether to the mask (tho' silicone's noted to not be a problem for most) to something (else) you had that day.

Allergic reaction--nice catch, Julie.
Maybe even from cleaning products used for the nightly cleaning.
My first impulse was a wrong size mask, adjusted too tight to hide tha fact it is the wrong size.
Happens all the time. DME employees, hired off the street, with no qualifications.

When I was using a too-small FFM, it was pressing against my bottom teeth and if my jaw dropped too far the bottom of the mask would end up in my mouth. Go to our host's site, cpap.com, and find the page where they sell your mask. There may be a link on the page to that mask's sizing guide, which you can print out and use to check your size. Given that your DME gave you a nasal mask because it had apparently never occurred to them that some people sleep with their mouths open, I wouldn't trust anything that they said or did!

Sizing is really a matter of trial and error, unfortunately. I wear an Amara View, which I absolutely LOVE after using an F10 for 18 months which was giving me a bloody sore on the bridge of my nose by the end. Since starting therapy in Oct 2014 I have lost 130 lbs, and my face has definitely gotten smaller (glasses don't look right...) but in the F10 my size went up not down as I lost the weight. (According to the F10 template I was exactly on the line between small and x-small. As the weight came off I went from x-small up to small.) And with the Amara, the sizing template says that I am exactly in the middle of the range of medium, but two months ago I experimented with a small and discovered that I'm a small in that mask. (The Amara is a radically different design for a FFM, in that the top of the mask goes over the tip of your nose. The three sizes are only different in depth -- so it's about how far the tip of your nose sticks out from your face -- but there is a complex relationship with the shape and size of the mask and the shape and size of my face. So, really, it's about trial and error... If you buy a mask from cpap.com, you can get mask insurance and send back masks that don't fit.

Also, knowing when the mask is on right can take some practice. With the Amara, I realized that there were three states, not two -- a noisy "mask fart" giant leaking, a soft hiss, and almost complete silence. It took me a week before I achieved silence -- I was thinking that the soft hiss was good, and it's not! There is a little flick-of-the-wrist move that needs to be mastered where you strap the mask on, then pull it straight out and let it "settle" back on your face, with a slight push at the end for a great seal. It's like riding a bike, you just have to learn it!

You also need to have something like Sleepyhead to know how the mask seal is going all through the night. Because, you know, you are UNCONSCIOUS when the therapy is working! I tolerate some short periods of leakage in order to keep the mask as loose as possible, and, yes, I do wake up some nights because my pillow has knocked the mask a bit off. (I'm a side sleeper.) But I'm pretty good at adjusting mask and pillow and going right back to sleep, and MUCH happier not having ugly marks on my face for hours after I wake up.

As for trying to change your mouth breathing, are you sure you want to do that? In my case I realize that it's not going to happen -- as I drift off to sleep with my mouth closed, my nose closes up, and eventually I have to open my mouth in order to breathe. Yeah, it makes for morning breath, but CPAP therapy is all about breathing, and so I'm not going to fight it!

Also over time the straps loose the elastic, and basically become ropes. You may need to tighten them up a little,the manufacturer could spend a few cents and make them stronger. Your hair growing may cause a change too, maybe you changed the style a little.

The reason you slept sounder with the FF mask, could have had to do with mouth breathing some with the Nasal mask, losing some needed treatment. Also my FF mask seems to run cooler, I like cool. Jim