Hello, thank you and a couple questions

[ChicagoGranny]

... A few days ago I got a full face mask (dreamweaver), but only used it one night because it leaks terribly...

For any mask, find the model on youtube and carefully watch three or four videos on fitting and adjusting. Some of them can be very helpful.

[MO Gal]

I have seen the other mouth tapes on Amazon. Will keep the Somnifix in mind. The last 2 nights I slept with the nasal mask and am having a much easier time keeping my mouth shut by doing the 'tongue on the roof of the mouth' so I haven't tried the tape again.

The tech that fitted me with the full face mask knew the headgear was too large. I found if I pulled the part where the hose attached (top of my head) back about 3 inches it helped make a good seal, but of course it was awkward with the hose on the back part of my head and it slipped forward quite often. Hoping to get a small sized headgear and a heated hose in the mail soon. For now I am sleeping all night with the nasal mask (gives me the green smiley face for no leaks?). The medical facility I am using was flooded and I'm guessing they lost a lot of supplies.

I do have at least 1 other supposed autoimmune disease (granuloma annulare for almost 50 years) and do have some blood markers such as positive rheumatoid factor. ANA was once positive, but last test it was negative. I'm a mess. lol

[mummmz]

I also have secondary polycythemia due to sleep apnea. The CPAP helps keep me in normal range and If blood tests show it's elevated the hematologist suggested donating blood. Helps me and a person in need too. I bought an EMAY brand recording oximeter on Amazon. The batteries only last 3 nights before they need to be replaced. I don't use it every night but it's good to check now and then. The doctor wanted to order the overnight pulse oximetry to see if I could go without supplemental O2 and I was able to send her the report from the recording. With that and a 6 minute walk test I got off the O2.

[MO Gal]

Mummmz, thanks for the info on the oximeter. I'd like to give blood, but with the granuloma annulare (skin lesions) being on the inside of my elbows where they take blood I'm not sure they would even let me. I guess I should go to the next nearby blood drive and find out.

[clownbell]

@OP - You mention the green smiley face regarding leaks. This has a definition, just as many things in CPAP. It does not mean "no" leaks. It means leaks not large enough to be a big problem. The left-hand pane of the OSCAR screen tells you what percentage of the night you were in "large leak" territory. My memory may be failing me, but I believe the definition is there is a problem (and red frowny face) if in large leak >20% of the night. Hopefully an expert will be along soon to correct me if needed.

Of course, ANY leak that bothers you or wakes you up should be addressed.

[Pugsy]

I believe the definition is there is a problem (and red frowny face) if in large leak >20% of the night. Hopefully an expert will be along soon to correct me if needed.

Here's your correction...

Mr Smiley (Resmed machines) doesn't change into Mr Frowny for leak management until someone spends 30% or more of their night with leaks in excess of 24 L/min.
It's not 20 %.
It takes a LOT of excess leak to add up to 30% or more. I have seen Mr Frowny on a rare occasion though.

[Janknitz]

EDITED:

The original was not clear, about which vent could be blocked but Ozij has clarified the ambiguity. So I'll just leave this part here:

NEVER BLOCK THE CO2 VENTS.

You do not need to open your mouth to avoid chipmunk cheeks with a nasal mask. Try this experiment:
1. Put your tongue on the roof of your mouth.
2. Plug your nose
3. Try to breathe in through your mouth.
Most people cannot breathe in through their mouths with the tongue in this position because this seals off the oropharynx. So if you can get a good seal there, no air will escape into the mouth to cause "chipmunk cheeks". Sometimes people can't hold that seal at all, or can't in their sleep (especially if you've had surgery trying to fix apnea), that's when chipmunk cheeks can happen. I have read that it's a good idea to have a small slit in the tape so that some air can escape, but not enough to significantly reduce the pressure.

And most of us will wake if we vomit or reflux, so we can rip the tape off and let the stomach fluids OUT.

[zonker]

NEVER BLOCK THE CO2 VENTS.

shouldn't this be in the faq?

[ozij]

When you wear a nasal mask (STILL VENTED) and keep a natural seal, the CO2 still escapes from the vents. Taping your mouth won't change that, but taping might be a danger if you vomit or reflux in your sleep and aspirate the fluids into your lungs.

NEVER BLOCK THE CO2 VENTS.

Something I wrote, originally quoted by Janknitz was not clear and could be misunderstsood. I have edited my original message to make it absolutely clear that the only vent I suggested covering, if necessary, is the small vent in the Somnifix tape.

NEVER BLOCK THE CO2 VENTS OF ANY MASK. absolutely true, which is why I am repeating it.

[babydinosnoreless]

Fatigue and brain fog are a part of every autoimmune disease that I know of and I have a lot. Including hashimotos or graves depending on which doctor I see. Apparently I have the antibodies for both.

Pap has helped tremendously, however brain fog and fatigue are something I suspect I will always have to live with.

I have seen rheumatologists, endocrinologists and neurologists and pulmonologists. IMO there should be a specialists for autoimmune issues as very few of us only have one. I'm sick and tired of being bounced around.

[ChicagoGranny]

As with everything else with CPAP, "Your Mileage May Vary"! Somnifix may not work for you. It works for me.

I used Somnifix for several months. Then, I tried the X-shaped sleep tape which is sold through Amazon. I tried it because it is so much cheaper than Somnifix. It turned out to be easier to apply, and it works well. AYS, YMMV.

[readingteacher]

I used Somnifix for several months. Then, I tried the X-shaped sleep tape which is sold through Amazon. I tried it because it is so much cheaper than Somnifix. It turned out to be easier to apply, and it works well. AYS, YMMV.

That's so interesting! I did it the other way: started with X-shaped tape, than switched to Somnifix!

I have a severe TMJ disorder, so when I was diagnosed with sleep apnea, both my dentist and my physical therapist emphatically told me that I could not use a FFM or a chin strap. Had to be a nasal mask or nasal pillows. So when it became clear that I was having mouth leaks, I tried the X-shaped tape from Amazon because it seemed like the least restrictive invasive way to start. I worked well for me for several months. Once I finally got my mask and settings dialed in, I started to really relax during sleep. My mouth relaxed too, and I started getting large leaks around the X tape -- red frowny-face on the machine and cheeks-stuck-to-my-teeth dry mouth in the morning!
So I needed something that sealed my mouth more completely, and tried Somnifix. I have loved it and used it ever since.

Just proves again that CPAP comfort and effectiveness are so very individual!

[MO Gal]

I have seen rheumatologists, endocrinologists and neurologists and pulmonologists. IMO there should be a specialists for autoimmune issues as very few of us only have one. I'm sick and tired of being bounced around.

Me too, me too. I also see a hematologist for the polycythemia, she's actually done more testing than any other doctor.. still can't figure out what is wrong with me.

Thanks to everyone for the tips and responses. For the dry mouth (which I have had way before cpap) I use the Zyli-melts. Since the cpap I have also been having a 'tickle' in my throat, so sometimes sleep with a cough drop tucked in my cheek instead. Kind of afraid it might go down the wrong pipe in the middle of the night...but so far, so good.

[lynninnj]

I have seen rheumatologists, endocrinologists and neurologists and pulmonologists. IMO there should be a specialists for autoimmune issues as very few of us only have one. I'm sick and tired of being bounced around.

Me too, me too. I also see a hematologist for the polycythemia, she's actually done more testing than any other doctor.. still can't figure out what is wrong with me.

Thanks to everyone for the tips and responses. For the dry mouth (which I have had way before cpap) I use the Zyli-melts. Since the cpap I have also been having a 'tickle' in my throat, so sometimes sleep with a cough drop tucked in my cheek instead. Kind of afraid it might go down the wrong pipe in the middle of the night...but so far, so good.

Sounds extremely risky in light of the fact that the very nature of OSA is theoat tissues collapsing.

I guess you will be fine until the throat opens back up and you aspirate it into your lungs.

Of course thats a better case scenario than it actually causing you to outright choke where it never even makes it to the lungs.

Not trying to be doom and gloom, just honest.

PS- sorry forgot to ask if you have the throat tickle when you’re on your sides or on your back. That might give encouragement to side sleep if it’s less.

[ChicagoGranny]

Not trying to be doom and gloom

... just on a fear-mongering trip.