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UARS success stories
#1
UARS success stories
I've been lurking on this site for a few weeks now. I've found some information about UARS, but not really any success stories, so I'm hoping someone will write in with theirs.

My symptoms are debilitating. I haven't worked full time in three years and haven't worked at all in the past year. I used to love my job and love my life; now I just try to make it through each day. Sleep doc says that UARS is probably not the whole story but could be a significant part of it.

I started using APAP three weeks ago. First a Respironics System One (which was too noisy...high pitched squeal) then an F&P Icon (which was causing me to open my mouth on exhalation, I think) and now a ResMed AutoSet. I alternate between Resmed Swift FX for Her nasal pillows and a Respironics Wisp Nasal Mask. I prefer the pillows, but switch to the mask when my nostrils get sore. I am conscious of waking 2-3 times nightly to change positions without disturbing my mask. I fall back asleep almost immediately.

My AHI is always below 5, my unintentional leaks are zero and my pressure ranges from 5-11.

After two weeks, I had some temporary improvement. I started running, had people over, did some ironing (very rare in my house!) and told everyone I was getting better. But, it must have been placebo effect, as I'm now back to my tired and lazy "normal".

I've read in a few places to give it a good 5-6 weeks. So, I still have some hope. But that advice was from people with sleep apnea. I'd like to hear from someone with UARS.

If I do end up being a success story I will post again with a time-line.
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#2
RE: UARS success stories
Hi megan_charles,
WELCOME! to the forum.!
Hang in there for more answers to your question about URAS.
As far as your pillows mask, you might try some HPA Lanolin to help with the irritation in your nose. It can be found in the baby isle of most stores. Anyway, you just swav a LITTLE bit in your nostriles with a Q-tip and you might get a better seal as well.
Best of luck and hang in there.
trish6hundred
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#3
RE: UARS success stories
(05-08-2013, 04:06 PM)megan_charles Wrote: I alternate between Resmed Swift FX for Her nasal pillows and a Respironics Wisp Nasal Mask. I prefer the pillows, but switch to the mask when my nostrils get sore.

My AHI is always below 5, my unintentional leaks are zero and my pressure ranges from 5-11.
Sore inside the nose may be caused by nasal pillows wrong size or just a matter of your nose 'toughing up' over time, so try switching back and forth between nasal and nasal pillows masks

As Trish mentioned, you may also benefit from using nasal moisturizer which can provide some relief

If CPAP air feel dry and you,re already using humidifier, try higher setting ... if that causes condensation, try an insulating hose cover or climateline which on auto mode, you select temperature to preference and protects against rainout

[Whats the pressure for median, 95% percentile and maximum?]








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#4
RE: UARS success stories
Is the UARS based in AHI or RDI? With pressures up to 11 I would suspect you actually have OSA if it was based on test AHI rather than RDI which is usually worse.
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#5
RE: UARS success stories
@zonk: my median pressure is 7.7cm, 95% is 9.7cm and max is 10.8cm.
@Jcross: the UARS is based on RERAs, daytime symptoms and my response to modafinil. I don't think I had any apneas in the sleep lab, though I do at home, according to my APAP machines.

Thanks to everyone for advice.
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#6
RE: UARS success stories
(05-08-2013, 10:14 PM)megan_charles Wrote: @zonk: my median pressure is 7.7cm, 95% is 9.7cm and max is 10.8cm.
Nice set of numbers ... indicate optimal treatment
Next followup ... your doctor may want to narrow the range
Sleep-well

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