Three months...need experienced input

[Tired Linda]

Well, I wrote out a list of responses from my original post, and have been working through the list.

I found out, quite by accident, that my pillows for the hybrid need to be scrupulously clean every night. Not washing them one day pretty much ensures a night of waking to fidget with leaks.

Normally, I hate humidity in any form. But, I cranked my humidifier from 2 to 4 one night, and guess what...my AHI has been consistently under 9 ever since. THANK YOU, BIG DADDY!!!

I have also found I do much better taping my mouth shut, even with a FFM. I just can't keep the damn thing closed. Even with the chin support on my F&P 431, my lips flap

I'm not aware of any problems with acid reflux (nor did anything show in my sleep study) but I'm stopping tonight to get a wedge pillow and try that.

I have a Swift LT on the way for a test run.

I have an appt with my DME tomorrow afternoon to get fitted with a UMFFM. I'm sure they won't be happy with me, since they would much prefer to dispense nasal pillows. ("Soooo easy to fit"..her words) But that's what I want, and I've measured and tried every sizing guide I can find to determine the size I need. If worse comes to worse, I'll just ask for the specific size and take it home. Last I remember, they don't even have a place to lie down when trying a mask on.

I asked one of Santa's elves for a buckwheat hull pillow for Christmas...and she's all over it, so we'll see how that goes.

I think the only suggestion I haven't tried yet was to set my machine back on auto and try a smaller range of pressures. I should get around to that some time next week to see how that goes.

Oh, and 4-5 nights of tennis balls attached to the back of my shirt has certainly curbed my back sleeping. My husband will attest to that. I plan on wearing them every now and then, though, just to make sure I keep off my back.

Something has to happen soon...if it doesn't, then I think I can safely tell my sleep doc I've tried everything.

Linda

[Julie]

Hi, yes the mask in a way is everything (unfortunately!). Also unfortunate is that tightening it as much as you have can even make things worse by forcing it to overcompensate somewhere else with microleaks (whatever your stats say) and/or just lousy sleep. There really are other masks worth trying and some of us have gone through 10 to find the right one, certainly to find the least uncomfortable one that is effective. If the F&P doesn't work, try an UltraMirage and work at getting your size (mine is the small-shallow size in that mask), try different tape, try whatever you can. It's a huge nuisance (and expense), but worth it, really.

[Tired Linda]

Thanks, Julie. I just so happens I've been eyeing an UltraMirage FFM and I'm due for a replacement mask next week. I just called and got an appointment. I figure insurance might just as well pay for the expensive one

BTW, anything tight or uncomfortable I don't wear...which is why I'm currently using the hybrid. It's very comfortable for me...unfortunately, it just doesn't do much for my numbers.

[Emilia]

You could try auto again with a much tighter range of 8-12 and see how that goes. I was amazed how just moving up my bottom number one notch reduced events. Just a thought..... I am sorry you are having these problems. I hope you find the magic mask soon

[davecpap]

I was chasing low AHIs for a while when I noticed one night staying at a hotel my AHI was the lowest it'd ever been. With the help of folks on this forum, I discovered changing my pillow made all the difference - check out these numbers:

viewtopic/t57101/viewtopic.php?f=1&t=55391

I also found out I was mouth breathing - my leak rate rarely went above the dreaded 0.4L/s or 24L/min line in ResScan, but it wasn't flat either. Getting a PapCap to address the mouth leaks brought the AHI down further. I also noticed that with my mouth closed the machine delivered lower pressure (dropped about 1-2 cm on average) - the lower pressure helped with my aerophagia.

[Janknitz]

You mentioned that the FX and taping worked well for about a month and then you couldn't get the pillows to seal anymore. A month is about the expected "lifespan" of the Swift pillows (I seem to get longer periods from some but not all of the Swift pillows). I'm wondering if you changed to a new nasal pillow it might work for you again????

[Tielman]

Don't know if anyone else has mentioned it, but you may want to not overlook the obvious.

A few months ago I was as frustrated as you are. I found two things that really helped:
1) Reviewed my medications and made adjustments to them based upon how I felt, and how they were working (with Dr. Approval!)
2) Added a 9" slant wedge to sleep on, figured it wouldn't hurt. Basically changed my whole outlook, went from 3, 5 and 7 AHI on every other day to .5, and 1 with an occasional 3-4. Due for an endoscopy tomorrow to see if I have GERD / Acid Reflux (pretty sure!) and how bad it is, and what medicine may work for me.

I concur about the sleeping on your side, it definitely helps. I also changed my nighttime routine to taking my prescriptions (blood pressure, etc) from morning to night, and also stopped eating about 2 hrs prior to going to bed.

Hope you find the answer, it's out there so keep looking for it!

[M.D.Hosehead]

T.L.

Have you discovered this page:

https://www.cpap.com/cpap-mask-sizing.php


Simply enter all the measurements requested and you will be rewarded with a list of masks most likely to fit you.

[Big Daddy RRT,RPSGT]

I found my AHI improved with more humiditiy. I know this is not true for many but for me increasing the humidity seem to decrease my chronic nasal congestion making it easier to breath even though I didn't really feel dry. Just an idea.

[Tired Linda]

T.L.

Have you discovered this page:

https://www.cpap.com/cpap-mask-sizing.php


Simply enter all the measurements requested and you will be rewarded with a list of masks most likely to fit you.

Aaaah, yes, I have this printed out and use it as my "shopping list." I'm letting my DME "buy" one for me next week, though!

Thanks,
Linda

[Tired Linda]

I found my AHI improved with more humidity. I know this is not true for many but for me increasing the humidity seem to decrease my chronic nasal congestion making it easier to breath even though I didn't really feel dry. Just an idea.

Big Daddy, I ususally have my humidifier on 2 with the hybrid, any more than that and I feel like a rain forest. I'll keep that in mind, though.

Linda

[Tired Linda]

You mentioned that the FX and taping worked well for about a month and then you couldn't get the pillows to seal anymore. A month is about the expected "lifespan" of the Swift pillows (I seem to get longer periods from some but not all of the Swift pillows). I'm wondering if you changed to a new nasal pillow it might work for you again????

Jankknitz, this is indeed something I thought of yesterday and may be worth pursuing.

Thanks.

[scrapper]

the Swift FX and mouth taping worked for about a month and then I couldn’t get the pillows to seal,

This is usually the indication that it's time for new pillows..........since insurance even allows 2 per month, there must be some correlation between the average life of pillows and the replacement schedule. I've had pillows last a couple months, and some last only a month or less.

Instead of taping, I've gone to a simple boil & bite mouthguard from WalMart for $1..........and that's been effective to eliminate mouth breathing most of the time......

[Emilia]

My Swift LT pillows started to fail me at about 8 weeks and I had to move to new ones. Definitely give new pillows a try!

[rubymom]

I guess my biggest question is...how do you feel? Are you feeling any better?

Also, when you said things went crazy at a pressure of 13, what does that look like?