UARS - Has the CPAP or APAP actually worked?

[England]

I just wanted to know if anyone out there has had success with treating UARS with the CPAP or APAP machine. Please let me know if this treatment has worked for you.

Thank you!

[CatherineF]

I would like to know someone who did... I've read a huge article about UARS (in my national language) and they said that nCPAP therapy was helpful in pateients with UARS, so I hope they were right. I think that it is really possible, only if we are able to tolerate CPAP. England I am doing experiment now, I switched to simple CPAP mode on pressure 13, with Easy Breath technology for 3, which means 13 - inhale pressure, 10 - exhale. I don't want higher pressures yet, so it would not be dangerous, besides on autopap the highest I "went" was 13 cm H2O. I presume that I may need higher pressure, like 15 but I am going to try this 13 for now and we'll see... I am following dr Krakow's advices, that higher pressure may be needed to adress UARS component of my SDB. I can't buy BIPAP now, and with my mask it is already hard to use this 3 IPAP-EPAP difference, because FFM jumps on my face. With nose mask it is better, no jumping, but I have to tape my mouth. But this is the risk I am willing to take. All in all I feel like I was dying already so it can't be worst.

I think that succesful treatment for UARS should consist of: opening the airway at night, treatment of GERD/LERD, RLS (if present), additional treatment of overreactive nervous system with meditation/ acupuncture/ deep breathing/ biofeedback, adaptogenic herbs or tianeptine, healthy diet, some mild excercises, maybe some somnoplasty for nasal turbinates and soft palate, or tongue base reduction with laser coblation or RF. I want to know about this sickness as much as I can and I will share my progress with you all ( I hope there will be progress...). I hope we will all recover and feel good and healthy again.

I am experimenting and I am responsible for this myself. I don't advocate this! If you folks have good doctors, you are lucky, I have to count on me only. Anyway I think that no one knows for sure how UARS should be treated succesfully (maybe doc Krakow only, but I hope he is wrong, that simple CPAP can't help).

[SleepingUgly]

I just wanted to know if anyone out there has had success with treating UARS with the CPAP or APAP machine. Please let me know if this treatment has worked for you.

Studies show it does.

[Arthurs]

It's worked for me. Diagnosed with UARS a couple years ago, CPAP 8.5 cm H20. When I take a nap without CPAP, I feel like crap afterwards! Can't imagine sleeping without CPAP!

[England]

CatherineF, I would love to know how your "tests" work for you as we are both in the same boat . After you mentionoed what your read about how the bipap might be the way to go for UARS, I got a little worried as I don't think my insurance covers the Bipap and it looks like it is more expensive, just can't afford that right now. I'll keep trying my APAP, it's only been a week, so I realize it might take weeks or even months before I notice a difference, I'm willing to wait, as long as I know it will work in time. That will be a happy day!

Arthurs, I am so glad to hear it works for your UARS! That makes me feel very hopeful! So you said you use the CPAP, not the APAP right? I wonder if I should switch mine to CPAP mode.

[CatherineF]

England I would update any progress as soon as I notice any. For now I am having terrible problems with falling asleep with swift fx mask, it is easier with quattro but it leaks :/ I think I've got a wrong size... I tried mouth taping with swift, along with chin up strips but it is annoying to feel like hamster with cheeks full of air whenever my toungue changes position...

Regarding BiPAP, my insurance doesn't cover even my APAP machine, there is no way it would cover BiPAP... I am going to try CPAP for 3 months (3 months of actual sleep with it), along with treatment of other causes of arousals, we'll see how it's gonna be...

[Arthurs]

Arthurs, I am so glad to hear it works for your UARS! That makes me feel very hopeful! So you said you use the CPAP, not the APAP right? I wonder if I should switch mine to CPAP mode.

Yep, just plain old CPAP worked for me, 8.5 cm. Got a fisher paykel 608 for a good deal on cpapauction.com.

[Linus]

CPAP works for me with UARS. I am using a auto CPAP and it helps. As soon as I lie down without CPAP, I can feel my sinus cavities shutting. It is a night and day difference.

[Jade]

Cpap worked better for me than apap, but using neither works best of all. Unfortunately, I'm stuck unless/until I figure out what to tweak to improve things.

[Bright Choice]

England I would update any progress as soon as I notice any. For now I am having terrible problems with falling asleep with swift fx mask, it is easier with quattro but it leaks :/ I think I've got a wrong size... I tried mouth taping with swift, along with chin up strips but it is annoying to feel like hamster with cheeks full of air whenever my toungue changes position...

Here's my experience with masks and leaks - copied from my post elsewhere but it thought it might help you CatherineF: I had Darth Vader leaks with Swift LT and FX nasal pillows. My best chin / lip strap solution goes as follows:

I use a 2" self adhering Ace bandage - available at Walmart, my local grocery, or Walgreens = http://www.walgreens.com/store/c/walgre ... 22-product. I take a length of about 24" which is about half a roll. Start at the top of your head, taking about half of the length, wrap it down under your chin and then back up to the top of your head. Then wrap it around again, top of head to chin and back to top of head. You will end up with two loops. Ease it off of your head and safety pin the cut ends and loops together so that it doesn't fall apart. When you are ready for bed, pull the doubled loops on. I put the safety pinned ends at the top of my head so that I don't lay on them. Snug the loops over your chin and voila - a perfect chin strap that really stays in place.

Then there's the mouth leak variation: I leave the bottom loop to support my chin and ease the top loop up to cover my mouth. Works great! No need to tape - you've got a 2 in 1 chin strap / mouth sealer.

That worked great while I was on cpap. Now I am on higher pressures with asv and it doesn't work anymore. - Too many bursts of air into my cheeks so I have had to go to ffm (mirage quattro)

I have struggled with trying to use Swift LT or FX with asv and have been unsuccessful, even with the ace trick. I tried my Quattro FX and that was just one face fart after another. Then I got the Mirage Quattro which I was truly prepared to hate. It was leaky, I tried janknitz's suggestions about "taming the quattro" which you will find under her signature. That helped, some. Then I found the suggestion from dsm to try Padacheek's antileak strap: http://padacheek.com/PAC_AntiLeak_Strap.html. I ordered the strap but while waiting for it to come, I took the top loop of the ace, cut a very small hole in the ace and threaded it over the elbow of the Mirage Quattro. Oh my, that is a "spot on" suggestion! Last night I was down to zero leaks. I am also using Remzzz, 1 under the forehead piece and 2 on the face piece.

Just got the padacheek antileak strap in the mail today. It looks really well made and I think it's going to be perfect.
EDIT to add: really bummed that the padacheek antileak strap didn't work as well as I had hoped. I still need the chin strap and the padacheek strap slipped down the back of my head and I found myself taking the whole gear off in the middle of my sleep. The padacheek strap does have some velcro in the back to prevent slipping, I will experiment with that, but I think the my handy dandy ace solution is the best.

If you want to tape your mouth, 3M Microfoam tape is pretty neat. I ordered it on Amazon. This is not Micropore from the drug / grocery store. It is surgical tape and is quite sticky but pulls off very easily.

Hope some of these suggestions help. Good luck!