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New User - UGH I'M DYING
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Shastzi Offline

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Posts: 1,174
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #11
RE: New User - UGH I'M DYING
I must agree. I can't believe they would hook a newbie up to 18cm pressure.
When I first started 12 felt like it was going to blow my brains out.

I had to work up to it over time. Starting out low at about 6-8 and spend a week or so acclimating then bump it up a
1-2cm then sit on that new pressure a week.
etc.

Why cant these dimwit doctors understand the basics of *ADAPTATION*??
I think that was covered in first year biology.

Now I am running 15-20cm and I can barely feel it.
See is you can work up slowly.

Best of luck!

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
01-14-2014 04:37 PM
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fuzzmanks Offline

Members

Posts: 12
Joined: Feb 2013

Machine: ResMed S9 Elite
Mask Type: Nasal mask
Mask Make & Model: Respironics TrueBlue
Humidifier: ResMed H5i
CPAP Pressure: 8
CPAP Software: ResScan

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Sex: Male
Location: Kansas USA

Post: #12
RE: New User - UGH I'M DYING
(01-13-2014 07:09 AM)Oppressed Wrote:  So I have been prescribed a CPAP a few days ago. My prescribed pressure is "18", which I have been told is pretty high (machine only goes up to 20). I have been fighting constant sinus problems for the last few years. My nose is continually stopped up and blocked, and with the CPAP at this much pressure, it's almost impossible to use. It feels extremely difficult to exhale, and if I do start to fall asleep, I wake up because I'm not exhaling without forcefully blowing.
(snip)
I have been seeing an ENT about my sinus problems but after about a year and a surgery he has been unable to help me. I just recently started with a new ENT to hopefully get some help the other ENT couldn't give. Has anyone been in a similar situation? How did you deal with it? I'm ready to hurl this (*@$&@* machine at my doctor's head....

I've also had sinus issues for several years and have declined the recommended surgery. I've been working with a allergist for a year now. Testing did indicate 4 triggers for me. But nothing year around except for cat and dog dander. My doc has had me try Patanase, and an acid reflux Rx called Pantoprazole Sod, stopping aspirin for a month, and various things to try and figure out what is causing my issue. He suspects a low grade sinus infection. For years I was using Nasacort AQ spray (which is a form of steroid) that did help me but after a week or so I would get nose bleeds from the drying effect. Sinus rinses helped a lot but didn't last all night. The thing that helped me the most (I'd say 75% improvement) was Budsodine (not sure of spelling) that comes in small vials (also a type of steroid) that is intended to be used as an inhaler med (in a nebulizer) for the lungs. But for sinus use it is mixed with your normal sinus rinse and 1 oz. is "snorted" up each nostril all the way to the back of the throat. But in 3 weeks I was up to about 50% improvement and after about 6 or 8 weeks I was at 75% but then I got a allergy setback (from being around 3 large dogs for 1 1/2 hours) the week before Christmas. I'm almost back to my 75% improvement now...meaning less stuffiness and less overall mucus. It is much easier to sleep with the CPAP (although my pressure is only at 7). It is an expensive Rx.
01-15-2014 10:17 PM
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Airhead Offline

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Posts: 5
Joined: Mar 2012

Machine: s9 autoset
Mask Type: Nasal mask
Mask Make & Model:
Humidifier: yes
CPAP Pressure: 7-12
CPAP Software: ResScan

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Sex: Male
Location:

Post: #13
RE: New User - UGH I'M DYING
Sleeping with cpap is about matching your breathing with the machine.Try slowing your inhale near the end of your breath,then pause before you exhale. Give the machine time to stop blowing before you exhale. Do the nasal rinse, if it doesn't last all night get up and do it again. I've only been on cpap for 2.5 yrs and it never feels natural, but it's better then not breathing( but only alittle bit). And yes, get the autoset, it's the reason we don't need or want dr's to set pressure levels.
Thank you, everyone for keeping me from going crazy during my early days!
01-18-2014 03:46 PM
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me50 Offline

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Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

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Sex: Undisclosed
Location: USA

Post: #14
RE: New User - UGH I'M DYING
(01-14-2014 04:37 PM)Shastzi Wrote:  I must agree. I can't believe they would hook a newbie up to 18cm pressure.
When I first started 12 felt like it was going to blow my brains out.

I had to work up to it over time. Starting out low at about 6-8 and spend a week or so acclimating then bump it up a
1-2cm then sit on that new pressure a week.
etc.

Why cant these dimwit doctors understand the basics of *ADAPTATION*??
I think that was covered in first year biology.

Now I am running 15-20cm and I can barely feel it.
See is you can work up slowly.

Best of luck!

that is why I think an autoset is so important for docs to order and also for the docs to use the autoset and not straight CPAP. Then nobody would be getting pressure 18 the whole time they are sleeping but will get it if/when they need it. JMHO
01-18-2014 03:52 PM
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herbm Offline

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Posts: 852
Joined: Jan 2014

Machine: ResMed AutoSet S9
Mask Type: Oral
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: ResMed H5i
CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #15
RE: New User - UGH I'M DYING
I am a newbie -- I probably know nothing so take that into consideration.

Due to being a mouth breather with chronic nasal blockage I chose as my first mask (I haven't even seen it or tried CPAP yet) an Oral Mask which is basically somewhat similar to a scuba mouthpiece.

It fits mostly between your teeth and gums with a small flattened tube between your teeth (and a cheek 'cover' on the outside.)

This might be totally worthless to you, but I wanted to make sure you at least knew about the choice.

Fisher & Paykel Oracle HC-452 Oral Mask with a video review by [[ Auto Word Filter: links to spam URLs not allowed ]] guy at:

http://www.youtube.com/watch?v=rQmARrw-OXM

More (instructions laboriously step by step): http://www.youtube.com/watch?v=F5C-c_BJh20

This reviewer has a really good attitude towards the Oral Mask but he keeps pointing out disadvantages so you should likely watch this if the mask interests you http://www.youtube.com/watch?v=6_uWKiywRTM

Had I seen the last video first, maybe it would have scared me away, but having been a commercial diver in my twenties*, I am pretty sure the trade-offs are better FOR ME with this mask. (And remember, I don't know what I don't know.)

You can likely find more if this is of any interest or use to you.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
01-28-2014 09:55 AM
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robysue Online
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Posts: 1,223
Joined: Oct 2013

Machine: PR Dreamstation BiPAP Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: PR Dreamstation humidfier
CPAP Pressure: min EPAP = 4; max IPAP = 9;
CPAP Software: SleepyHead EncoreBasic EncorePro

Other Comments: Papping since September 2010

Sex: Female
Location: Buffalo, NY

Post: #16
RE: New User - UGH I'M DYING
Oppressed,

It's important to understand that most docs are not particularly interested in dealing with patient's medical problems that lie (mostly) outside their area of expertise---even when those medical problems seem to be causing additional problems with things the doc has prescribed (like CPAP) to treat a condition that is in their area of expertise (like OSA). So it's important (for now) to describe your CPAP adjustment problems in language that the pulmonologist/sleep doc believes falls under his area of expertise. And unfortunately, that doesn't include sinus problems (for now).

But you also write:
Quote:It feels extremely difficult to exhale, and if I do start to fall asleep, I wake up because I'm not exhaling without forcefully blowing.
Call the doc's office back and politely, but firmly state that you have been unable to use the machine at its current settings for more than a few minutes because you cannot exhale comfortably against the 18cm of pressure and that this is preventing you from falling asleep.

I repeat, when talking to this pulmonologist don't bring in all the sinus stuff yet since he'll just think, "Sinus problems aren't what I do, you need to see an ENT for that." As bad as the sinus stuff is, your first problem with CPAP right now is exhalation against the pressure and that's a problem that is within the pulmonologist/sleep doctor's supposed area of specialty. So when you are talking with the pulmonologist keep the focus on "I can't exhale against the pressure. What can be done to make it easier for me to exhale against the pressure so that I stand a chance of falling asleep?"

Because there are things that can be done to help the "can't exhale problem."

Here's a list of things that either the pulmonologist (or you) can do for trying to fix the "I can't exhale" problem that is currently your biggest CPAP adjustment problem:

1) Since you are having real problems exhaling and your pressure setting is so high, it is worth asking the sleep doc whether a bi-level PAP might be in order. A bi-level PAP allows for the inhalation pressure to be set several cm higher than the exhalation pressure, and that in turn typically makes it much easier to exhale fully and comfortably. While many CPAPs have some form of exhalation relief, even if it is set to its maximum setting, that may not provide enough relief for you to exhale comfortably. (Some sleep labs will routinely switch a patient to bi-level during a titration study when the pressure hits 15 cm.)

2) Correctly using the ramp. The ramp allows you to start out at a much lower, nontherapeutic pressure that is comfortable while you are awake. The pressure increases over a fixed amount of time until the desired pressure is reached. The idea is that if the pressure increase is gradual enough, you'll be able to fall asleep before the full blast of 18cm of pressure keys you up or wakes you up. Ideally, the ramp time should be for a bit longer than it takes you to get to sleep. If the starting pressure is too low, however, that can increase discomfort for some people because (ironically) it can feel as though there's not enough air coming through. If the ramp time is very short and the starting pressure is very low, then sometimes the "gradual" increase in pressure doesn't feel so gradual and that can keep you up. So if you want to experiment with the ramp, I'd suggest starting with something like:

Starting ramp pressure = 10cm (or maybe even 8cm if 10cm feels like it's too much)
Ramp time = 30 minutes (if you usually get to sleep in 20-30 minutes without the CPAP).

4) Exhalation relief. If your machine provides exhalation relief, it should be turned on and turned to the max setting. If it doesn't have any exhalation relief, the doc should be willing to prescribe a machine that does. And note: The SenseAwake on the ICON is not really the same as "exhalation" relief---it lowers the pressure when the machine thinks you're awake, which is not the same as lowering the pressure on every exhalation regardless of whether you are awake or asleep.

5) The pulmonologist may be willing to temporarily lower your pressure and raise them a little bit at a time so that you can gradually get used to the prescribed pressure. It may be easier to start out at 10cm of pressure, even though that's not enough to control your apnea. After managing to sleep at 10cm for a week, the pressure could be increased to 12cm for a week. And then to 14 for a week and so on.

6) The pulmonologist may be willing to prescribe an APAP (auto adjusting PAP) with a pressure range of something like 15-20cm. That way you'll only have the pressure really, really high when it's clearly needed.

Once you feel as though you can actually exhale without excessive amounts of effort while using the machine, then it's time to start figuring out what to do about the sinus problems and how they interfere with PAP therapy. For now, you might try using a neti pot or a sinus rinse an hour or so before bedtime to clear out the worst of the congestion.

More suggestions need more information about your equipment: Do you have a heated humidifier? If so, what setting are you using? Do you have a heated hose? If so, what setting are you using?

The funny thing about sinuses is that everybody's are different: Some people's sinuses need the humidifier cranked up to the max. Other people get severely congested if there is any extra humidity at all. Some folks' sinuses love the extra heat provided by a heated hose; others react to the extra heat by becoming extra congested.
01-28-2014 11:09 AM
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Galactus Online

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Joined: Jan 2014

Machine: Phillips Respironics System One PRS1 DS760P Auto BiPAP
Mask Type: Nasal pillows
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: System One Heated Humidifier + Climate Line
CPAP Pressure: E/I 13/20 PS 4/7 BiFlex 3
CPAP Software: SleepyHead EncoreBasic

Other Comments: Sleep can be a good thing.

Sex: Male
Location: USA

Post: #17
RE: New User - UGH I'M DYING
I'm brand new to this, only two weeks in. I have a pressure of 18 as well. I have nose issues, stuffed, dripping, etc. I started with a wisk nasal mask, it annoyed the hell out me. I always felt like I was breathing in a wind tunnel, always felt like I was breathing against the storm. I used afrin, and various other nasal sprays including saline to clear my nose. I have had to do this sometimes multiple times during the night. I spoke to them about a nasal pillow mask, and they said I would hate it. Well I have one now the nuance with the gel nose piece, and it basically seals against my nostrils, I have been using it less than a week and where i used to feel like the machine was going to choke me to death now I can hardly feel the pressure. I actually woke up last night and thought the machine was off. I made the mistake of opening my mouth and got that rush of air to remind me it was on indeed.

Believe me when I say it gets better, and soon you will feel like a whole new person. It really is amazing how different I feel after only a few weeks. Wish you all the best success.

If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
01-28-2014 11:11 AM
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c0reDump Offline

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Posts: 157
Joined: Jan 2014

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Quattro Air
Humidifier: H5i (distilled)
CPAP Pressure: APAP 9-17cmH2O
CPAP Software: SleepyHead

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Sex: Male
Location: TX

Post: #18
RE: New User - UGH I'M DYING
Is it accurate that you are using a full face mask? That style mask covers the nose and mouth -- allowing you to breathe through your mouth normally. Don't even try to breathe through your nose when congested and using a FFM.

I second the others here who mentioned using the ramp function and maximum EPR. The EPR will at least bring the exhale pressure down to 15 (probably not low enough when trying to get used to xPAP).

Tell the doctor his prescription is no good at those settings because you aren't using the machine at all.
01-28-2014 11:19 AM
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archangle Offline
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Posts: 3,159
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Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #19
RE: New User - UGH I'M DYING
(01-28-2014 11:11 AM)Galactus Wrote:  I used afrin, and various other nasal sprays including saline to clear my nose.

Be careful with Afrin. It's only intended to be used a few nights in a row. After that, it may irritate your nose and make the problem worse, leaving you hooked.

Read the directions. The cautions about not using it long term are more important with nose sprays than they are on some other things.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
01-28-2014 08:28 PM
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archangle Offline
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Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #20
RE: New User - UGH I'M DYING
Are you still here, Opressed? Any progress?

Can you set your CPAP machine up and use it while reading, watching TV, etc.? That can help you adjust to the pressure CPAP.

Warning: take the water tank out before moving the machine.

It also counts toward your required 4 hours of CPAP usage for "compliance." I don't encourage this in order for you to cheat, but it may help you make it over the hump without getting into insurance problems. You do need to eventually use the CPAP for all of your sleep time.

I do encourage you to not sleep without CPAP. If you use it a while and then quit, it becomes a bad habit and delay your adapting to using it full time.

I wish doctors were more sympathetic about the problems of adjusting to high pressure. I think they should be more willing to put you on a lower pressure for several days and slowly bring it up to where it works. You might not actually be treating your apnea until the pressure gets up to 18, but it's better to be too low for a few weeks than it is to quit CPAP.

Keep at it. Most of us fairly quickly adjust to the point where the pressure doesn't bother us. I use 16, and I find myself having to lift the mask off my face to convince myself it's still blowing air because I can't feel it.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
01-28-2014 08:39 PM
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