Can I have my own thread?

[Bright Choice]

Today my eyes were drier than usual. I really hope not to have to go down THAT road again... I already have plugs in my tear ducts and use Restasis eye drops, and in general when I wake up in the middle of the night I put eye drops in due to dry eyes.

SU - this comment caught my attention. I went through the dry eye miseries about 5 years ago, prior to cpap. I know how miserable it can be. I went through some RX regimen with my doc and nothing worked at all. Ended up advised to use Restasis and moisture drops and bear with it.

Then... I moved to a new town, new eye doc. This guy was a gem. He said that the tiny little glands that run along the lower eye lid were plugged up, usually caused by a very mild inflammation. (My eyes did not look at all inflamed or infected). He prescribed Bacitracin Opthalmic ointment - to be applied to lower lid at bedtime. He also advised me to hold warm wash cloth up to eye lids and then massage that glandular area for a bit to get the glands to open up. (I only did that a few times) -

Voila! Instant cure!! It has come back a few times over the past few years but a short stint on Bacitracin makes it go right away. It starts with my eyes feeling really scratchy.

So, some food for thought. May have nothing to do with you, but this doc said that it is a diagnosis that is missed quite frequently, and obviously my first md was clueless.

Good luck!

[SleepingUgly]

I encountered aerophagia so bad I had to quit PAP entirely and take Dexilant daily for 6 to 8 weeks before starting back on PAP

did the Dexilant help your aerophagia? I am on it now, but was going to get off at some point as I'm no longer on NSAIDS, but maybe now is not the time!

at IPAP 10, EPAP 5. I stayed at that setting for 2 weeks before raising just 1 cm at a time once a week - and if I encountered aerophagia I dropped back down that 1 cm for another week before trying to raise it again. Sometimes I had to stay at a pressure change for two weeks, but always at least one week.

So it's possible to avoid aerophagia by slowly easing into a pressure?

[SleepingUgly]

Thank you so much for the advice! One of my big problems is that when my EDS gets very bad, my executive functioning goes, and I can't do a good job of prioritizing goals and subgoals.

I don't think I was leaking enough to affect the therapy or the data. However, considering my "outcome variable" is my EDS, all the awakenings from escaping air and lost sleep time could cause EDS. I might then think a setting was ineffective when actually the EDS was due to sleep disturbance, not settings. So I agree that I should not try to figure out the optimal setting until these are resolved.

OK, so here's what I've got planned for leaks:

• New pillows are on their way to me
• Today I picked up a pack of assorted O rings (one of them must be the right size!)
• I just received my Cozyhose boss so I'll rig that up
• I hit enough Walmarts that eventually I found the mouthguard that has a channel for upper and lower teeth
• I tried attaching the Swift LT for Her tubing to the top of my head last night, but I'm not sure if that's going to be good for me or not. I need to try it again, and not at 11:30p!
• Try Lansinoh vs. no Lansinoh

If above don't work for nose leaks, try:

• tights around the nose
• Combining Breeze pillows with Swift LT base (see BB's post)

If above don't work for mouth leaks, try:

• 2" self-adhering ace bandage, looped twice, and pinned at the top
• 2080-EL blue tape (if aerophagia isn't an issue)

During the time I'm working on these issues, I'll just hang out at a pressure of 6, or whatever won't cause aerophagia or other discomfort.

You guys are the best!!!

[SleepingUgly]

Then... I moved to a new town, new eye doc. This guy was a gem. He said that the tiny little glands that run along the lower eye lid were plugged up, usually caused by a very mild inflammation. (My eyes did not look at all inflamed or infected). He prescribed Bacitracin Opthalmic ointment - to be applied to lower lid at bedtime. He also advised me to hold warm wash cloth up to eye lids and then massage that glandular area for a bit to get the glands to open up. (I only did that a few times)

Interesting... I actually have punctal plugs, and I use Restasis (although interestingly, the Restasis ad says they don't work with punctal plugs! ). I am seeing my eye doctor in a couple weeks so I will bring this up to her. It would be great if there was an easy solution to this, as it ranges from interfering with my wearing contacts for as many hours as I'd like to not even being comfortable when I'm wearing my glasses.

[Bright Choice]

...it ranges from interfering with my wearing contacts for as many hours as I'd like to not even being comfortable when I'm wearing my glasses.

Yeah, I had to be out of my contacts too, which is a real bxxxx! (ie. bad thing )

[dukemom1]

SleepingUgly wrote: Today my eyes were drier than usual. I really hope not to have to go down THAT road again... I already have plugs in my tear ducts and use Restasis eye drops, and in general when I wake up in the middle of the night I put eye drops in due to dry eyes

I have Sjogren's Syndrome - which normally manifests itself first with dry eyes and dry mouth. It only gets worse from there.
I use GenTeal Lubricant Eye Gel every night, even before I started with CPAP. It comes in a tube and because it makes my vision blurry for a few minutes I put it in each eye last thing before I go to bed. Nasal pillows and chin strap first, then I slather Aquaphor all over my lips so they don't crack and bleed (love that stuff too), then I squeeze a thin line of the GenTeal Eye Gel into each lower lid. (I close each eye for about 20 seconds so the gel can disperse a bit.) It absolutely keeps my eyes from drying out overnight.

During the day I use GenTeal's Gel Eye Drops - they come in a bottle not in a tube. Besides being very effective, what I like about the GenTeal line is that their products are preservative free in the eye.
My opthalmogist has advised that one should never use eye drops that have a preservative more often than 4 times a day. I realize most people don't use eye drops that often, but Sjogren's patients do.

I hope you find relief. Dry eyes are no fun. (I can't wear contacts any more either, and I'm none too happy about it either!)

[Slinky]

Unfortunately, SU, I resorted to 3 "cures" at once so can not positively say any one of the "cures" was "the" cure or if all 3 or maybe just 2 of the cures, or even 1 did the job.

I did have one or two very small areas of inflammation in the esophagus that biopsied inflamed but "normal".
I was definitely encountering aerophagia.
I can be prone to bacterial overgrowth in the small intestine due to a high grade partial obstruction due to Crohn's so I was on a good probiotic and an antibiotic for bacterial overgrowth. All at the same time.
We were trying to cover all bases as I'm at high risk of requiring surgery for that partial obstruction.

Everything has pretty much cleared up.

BUT - I can still, even now, at night sometimes, get rather queasy and feel air bubble up for a burp but w/my full face and pressure setting I CAN'T burp w/o pulling the mask away from my mouth. If I don't burp I can feel it force its way back down my throat. So "I" think it was and is still aerophagia, just milder as I get acclimated to this higher pressure. This time I've stayed at the same pressure for a month now and I'm not sure when or even if I am going to try going higher. My sleep doctor would like to see me get up to IPAP 17, EPAP 13, PS 4. It depends on when and if this "bubbling" stops. He's leaving it up to me. I'm pretty much sleeping 6 hours a night, sometimes more. Depending on whether I cave in to a nap or not in the afternoon at the usual 2:30 PM time frame. 2:30 PM to 8:30 PM can get pretty rough w/o a nap. If I do nap it is for 1 1/2 to 2 hours when I then wake up on my own. Midnightish is my usual bedtime. Always one "potty trip" during the night. (Sure beats the 3-4 trips a night BP [before PAP])!!!

[SleepingUgly]

I forgot to mention that I also bought a role of that 2080-EL blue painters' tape, but I am hoping to return that roll (and not just because it cost $10 ). I don't think taping is an option to consider until the aerophagia is gone, and even then I hope it won't be necessary.

Interestingly, when I'd almost given up on finding the cheap dual-channel mouthguard at a Walmart, I went to a sporting good store and found a mouthguard that was just for the upper teeth (OK, that's not the interesting part...). It said that it puts the lower jaw in the forward position and the tongue in the roof of the mouth, which has been shown to enhance performance. So I bought it for my husband to wear. Seriously, I wonder if it would work as a cheapo mandibular advancement device and/or tongue trainer.

[Bright Choice]

Interestingly, when I'd almost given up on finding the cheap dual-channel mouthguard at a Walmart...

I thought that a dual-channel mouthguard would be necessary. But, I bought the "uppers" only and I don't find a need for anything more. My lower teeth settle into a notch (created by my bite when it was warm) in the upper guard and everything stays nice and snug.

I didn't want to start messing with re-aligning my bite. I had a "touch" of TMJ and don't want to awaken that monster.

Good luck!

[SleepingUgly]

I thought that a dual-channel mouthguard would be necessary. But, I bought the "uppers" only and I don't find a need for anything more. My lower teeth settle into a notch (created by my bite when it was warm) in the upper guard and everything stays nice and snug.

Are you saying that your mouth stays shut with just the top channel? Then what is the chin strap/ace bandage for? Actually, I just assumed you are using it as a chin strap, or are you covering your mouth with it?

[Bright Choice]

I thought that a dual-channel mouthguard would be necessary. But, I bought the "uppers" only and I don't find a need for anything more. My lower teeth settle into a notch (created by my bite when it was warm) in the upper guard and everything stays nice and snug.

Are you saying that your mouth stays shut with just the top channel? Then what is the chin strap/ace bandage for? Actually, I just assumed you are using it as a chin strap, or are you covering your mouth with it?

I am using the 2" self adhering ace as a chin strap, not to cover my mouth. That along with top channel mouthguard mouth leaks, farts etc seem to be gone. I have not tried mouthguard alone - I think I would be leaky.

If you try the ace, it needs to be pinned together at the top. It is tacky enough so it does not slip off chin, skin or hair but it won't hold itself together at cut ends. I use 2 loops around. For me it is great.

[SleepingUgly]

I am using the 2" self adhering ace as a chin strap, not to cover my mouth. That along with top channel mouthguard mouth leaks, farts etc seem to be gone. I have not tried mouthguard alone - I think I would be leaky.

If you try the ace, it needs to be pinned together at the top. It is tacky enough so it does not slip off chin, skin or hair but it won't hold itself together at cut ends. I use 2 loops around. For me it is great.

OK, I'm going to go back and edit my list of what I intend to do if the new measures don't work so I won't forget about this option. Thanks!

[ozij]

A year ago After swithching machines an have higher pressure, I had bad aerophagia and terrfying reflux - acid burbling up all the way into my nose when I turned in bed.

I dropped the pressure immediately from 8.2 to 6, had my PPI raised by the doctor.
I started easing back in 0.2 increments. For me, 0.2 is the only way to go.

A year later, I'm back on lower dosed of PPI, my LES had probably healed, the pressure is about a full cm higher than when I had that reflux attack. (9.4 EPR 2 today)

I don't remeMber ever raising pressure in 1 cm/h2o increments. My first machine had 0.5, and I used that for changing.

I think you can afford 0.2 a week - or even a month if it comes to that - while you're trying to get the mask to work
O.

[SleepingUgly]

My mouth did not stay shut with the Walmart boil & bite mouthguard that covered only the upper teeth. Last night I tried the Walmart boil & bite that covers both the upper and lower teeth, and I left in the hard, plastic tab that is supposed to be removed (otherwise I would be able to breathe, which would defeat the purpose). I was out of it, but I THINK that my mouth did not drop open; however, my mouth got dry anyway, probably because I couldn't close it completely.

[Slinky]

Thank you, SU, I'm learning right along w/you about this aerophagia bit. I've been toying w/the idea of an inexpensive mouthguard but didn't have the slightest idea where to find one except a sporting goods speciality store and there isn't one very convenient to where we live.