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Confused and left hanging
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Leiland Offline

New Members

Posts: 3
Joined: Aug 2016

Machine: Respironics System One Auto
Mask Type: Nasal mask
Mask Make & Model: ResMed Swift FX Nano
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: California, USA

Post: #1
Confused and left hanging
So technically I don't have sleep apnea, I have upper airway resistance. It took me many months, multiple sleep studies, a full MSLT and finally the esophageal pressure test. After the last, I got a call and the doctor basically said "You have UARS, I'm writing it down as OSA since insurance doesn't believe UARS is a thing, and here's a prescription for a CPAP."
I picked up my CPAP and the nurse boggled at my "incredibly mild numbers".
No one talked to me about what UARS is, what it means, how it differs from OSA, or what I should expect from CPAP. Everything I've learned about it has been from web searches.
I have tried using the CPAP, though I'll admit my compliance is low. Partially it's because my allergies are often really bad so I can't breathe well through my nose and the mask pinches on the bridge of my nose and effectively makes it impossible to breathe if I'm already stuffed up. I can't tolerate the nasal pillows, it feels like someone's spraying a compressed air can into my sinuses and it dries out something fierce.
I have a mask that's relatively comfortable, and my allergies have gotten much better, so I'm giving it a really good go. But I don't notice any difference whatsoever between wearing the darn thing and not. I'm tired and I can't force myself out of bed on time and I have zero energy and I've gained 40 pounds (which on my little frame is kinda huge) because I never exercise anymore. Most weekends I'll sleep for 12-16 hours out of the day each day, either all in one go or with naps. How on earth do I know if the thing is doing anything or not?
I just got sleepyhead, so here is my statistics page. I'm actually sleeping at least 8 hours a night most nights, but I have a bad habit of turning the thing off in the early hours of the morning because I wake up and it annoys me.
I'm just really frustrated. I've been passed from doctor to doctor and no one has explained anything, and then the one who prescribed me the CPAP made it sound like it would just magically cure me overnight. Obviously not the case.


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08-29-2016 10:34 PM
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Hmm888 Offline

Preferred Members

Posts: 64
Joined: Apr 2016

Machine: Remstar Pro Legacy/AirSense 10
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Respironics/Resmed
CPAP Pressure: -
CPAP Software: ResScan SleepyHead EncorePro

Other Comments:

Sex: Undisclosed
Location: This side of the Big Dipper

Post: #2
RE: Confused and left hanging
Just an FYI. MDs are ridiculously over prescribing sleep studies like the world is coming to an end.

Some of us who are on CPAP and have confirmed OSA don't have great sleep. I am not sure what you're expecting in terms of results.

If there is no medical restrictions prohibiting you from exercise, you should do that. It will clear your head and it will help you overall. My suggestion is not to get caught up or become OCD with all this stuff. If the doctor's haven't "explained" anything to you, then bring someone else with you when you talk to the doctors. Write down on a piece of paper all your questions. Perhaps you're not hearing what they're saying or you really have bad doctors where you live.
08-29-2016 10:51 PM
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Ghost1958 Offline

Advisory Members

Posts: 957
Joined: Aug 2014

Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #3
RE: Confused and left hanging
Mask wise an Eson nasal mask is very hard to beat.
Im using a Dreamwear right now but not sure if Ill stay with it or go back to the ESON.
That said it looks just from those numbers your min pressire is a bit to low.
If I run a 2 ahi or above im a zombie.
Also your averaging like 6 hrs a night.
Thats not enough sleep and off the machine sleep is harming you not helping.
There is also sleep debt. Once you get dialed in good your body will want to sleep more for a little bit.
Stick with it, get your ahi down below 2 and dont even nap off the machine.
Id try bumping my min pressure up a cm for a week and see if ahi drops a bit.
08-29-2016 11:01 PM
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Leiland Offline

New Members

Posts: 3
Joined: Aug 2016

Machine: Respironics System One Auto
Mask Type: Nasal mask
Mask Make & Model: ResMed Swift FX Nano
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: California, USA

Post: #4
RE: Confused and left hanging
Hmm888, I feel the need to point out that your response basically came across as "you're probably overdiagnosed, you're fine, just get some exercise and stop whining". Maybe that's just the depression talking, it does that a lot. I doubt that's actually what you meant. At least, I hope that's not what you meant. Simply not hearing what the doctors are saying would imply that they've said anything. I honestly don't know what my numbers are, if any. I don't know what led them to diagnose me with UARS, except that it had something to do with the pressure sensor they stuck up my nose and threaded down into the back of my throat. I have seen no data. No test results. No one has given them to me verbally. My conversation when I was diagnosed was literally less than 5 minutes. And I haven't had a doctor talk to me since, except to let me try a few different mask styles. And since my official diagnosis is OSA I'm hesitant to talk with doctors about UARS in case something gets to the insurance company and they pull my coverage for this.

I have been fall asleep at my desk tired for three years now. I hold handrails on staircases because I'm honestly afraid I will fall down them, because I keep clipping the edges of the stairs with my feet when I'm not paying enough attention to the act of moving my feet. This is not a state in which exercise is a terribly viable option. It hasn't gotten better. I am beginning to think it never will. And I'm sorry, but this is not life.
08-29-2016 11:49 PM
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PoolQ Offline

Advisory Members

Posts: 986
Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Integrated
CPAP Pressure: 6.2, 15, PS4.0
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Sillicon Valley

Post: #5
RE: Confused and left hanging
Leiland, First off WELCOME- you are in a good place. Lets start over, this is a good board filled with lots of great people willing to help. It may have sounded like, but I assure you it was not. Settle in and more people will respond, take some time to scope us out. I would talk about UARS, but I know nothing about it personally. I have no doubt that there are some pretty knowledgeable people here that can help. Pretty sure you will need to post some graphs from sleepyhead-it's free and there are links up top about where to get it, how to use is, and how to post graphs of a typical night.

Hang in there
08-30-2016 01:17 AM
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chill Online

Advisory Members

Posts: 862
Joined: Mar 2016

Machine: DreamStation X500
Mask Type: Full face mask
Mask Make & Model: Walk-in Mask Closet
Humidifier: DreamStation
CPAP Pressure: 13-16
CPAP Software: SleepyHead

Other Comments: CPAP True Believer

Sex: Male
Location: Vancouver, Canada

Post: #6
RE: Confused and left hanging
I am far from an UARS expert. I don't think that AHI is going to be particularly useful in assessing its treatment as it is primarily an OSA measure. Hence the nurse and the "incredibly mild numbers" comment. However, yours is high enough to make me wonder if your pressure is high enough to treat your UARS.

As for compliance, you need to wear the mask all the time, every time you are going to sleep or nap. Four hours a day might make the insurance company happy, but it is doing your brain no favours. If you want to dig out of this hole, you are going to need to commit to it long term and give it time to work. I wish it was like taking an Aspirin for a headache, but for most of us it is not. You might also want to consider trying a full-face mask if you are having problems breathing through your nose.

Finally, long term sleep deprivation is known to cause depression. Getting some effective therapy can make a world of difference. It did for me and I still have a long way to go to reach normal.

Stick with it, get your life back. With enough sleep it IS worth living. As hard as that might be to believe at the moment.
08-30-2016 01:28 AM
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trish6hundred Offline

Advisory Members

Posts: 6,449
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #7
RE: Confused and left hanging
Hi Leiland,
WELCOME! to the forum.!
I want to encourage you to stick with CPAP therapy. I know it can take some getting used to, but give it a chance to work for you, it will get better.
Hang in there for more responses to your posts.
Good luck to you on your CPAP journey.

trish6hundred
08-30-2016 09:04 AM
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Leiland Offline

New Members

Posts: 3
Joined: Aug 2016

Machine: Respironics System One Auto
Mask Type: Nasal mask
Mask Make & Model: ResMed Swift FX Nano
Humidifier: unsure
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: California, USA

Post: #8
RE: Confused and left hanging
Thanks everyone. I will try increasing the pressure on my machine a little bit more. I had increased the minimum from something like 4 to 6.5. I'll try bumping it up slightly more, to 7.5 and see what that does.

If an AHI < 5 doesn't qualify as even mild apnea, then why does an AHI that's under 5 still feel like such bad sleep?

I plan to work on keeping the mask on at night, and maybe I'll look into other mask options. If nothing else, I can probably swap out to a different mask when I'm stuffy.
08-30-2016 03:29 PM
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Ghost1958 Offline

Advisory Members

Posts: 957
Joined: Aug 2014

Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #9
RE: Confused and left hanging
UARS means your airway is restricted during sleep most of the time. Not obstructed like an OA, but reduced in size so that there is a lot of effort for you to ger adequate flow.
My wife has it as well. At too low a min pressure watching her sleep, you can see her chin actually pull down toward her chest with each breath. But the machine flags nothing because the flow isnt low enough. Even though its a major effort for her to achieve it.

A bump up of 2 cm min side, and her breathing is relaxed and effortless.
With a normal Ahi of .o5.

Id begin nudging my min pressure up gradually. At some point it will open your airway to overcome the UARS and youll start feeling better.
08-30-2016 03:51 PM
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