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New User - UGH I'M DYING
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Oppressed Offline

New Members

Posts: 1
Joined: Jan 2014

Machine: unsure
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: unsure
CPAP Pressure: 18
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #1
New User - UGH I'M DYING
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. I remember during the study they woke me up in the middle of it to put on the cpap. I did NOT sleep after that, I had a panic attack because I felt like I was suffocating. Plus I had drainage stuck in my nose that I could do nothing about with the mask on. I have told my pulmonologist about my sinus problem but he seems to blow it off or disregard it.

My insurance requires me to use this &$*@ machine for 4 hours a night for at least 70% of nights. So far, it's been about 4 nights and I have yet to be able to successfully use it more than a few minutes before I can't stand it. If I can't meet the required usage, I'll have to pay for the machine (about $1000). I'm about ready to see if I can just return the CPAP and tell my pulmonologist that I cannot use it with the sinus problems I am dealing with. I have been seeing an ENT about my sinus problems but after about a year and a surgery he has been unable to help me. I just recently started with a new ENT to hopefully get some help the other ENT couldn't give. Has anyone been in a similar situation? How did you deal with it? I'm ready to hurl this (*@$&@* machine at my doctor's head....
01-13-2014 07:09 AM
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DeepBreathing Offline
Wiki Editor
Moderators

Posts: 2,297
Joined: Sep 2013

Machine: Resmed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: Resmed H5i
CPAP Pressure: EPAP: 9 - 15 PS: 3 - 10
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Perth, Western Australia

Post: #2
RE: New User - UGH I'M DYING
G'day Oppressed, welcome to the forum.

A constant pressure of 18 is really high and I'm not surprised you're having a problem, especially considering your sinus issues.

A couple of thoughts come to mind - first, make use of the ramp feature, to build the pressure up slowly. Second, set the EPR (expiratory pressure relief) to maximum (also called A-flex or similar on some brands). You should have both these features available on your machine. If you can tell us what type of machine you have, it will help us give some more specific advice.

I suspect, however, that you are going to need a different type of machine called a bi-level (VPAP or Bipap). This allows a separate setting for inhale and exhale. I'm not familiar with the insurance requirements in the US, but I have read that if you can't tolerate a straight CPAP machine then you may be entitled to a bilevel.

Hang in there for some more suggestions.

DeepBreathing
Apnea Board Moderator
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01-13-2014 07:36 AM
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JimZZZ Offline

Advisory Members

Posts: 370
Joined: Dec 2013

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: ResMed H5i (not using)
CPAP Pressure: 9 - 14
CPAP Software: ResScan SleepyHead

Other Comments: CareFusion PureSom Ultra Chinstrap

Sex: Male
Location: Western North Carolina

Post: #3
RE: New User - UGH I'M DYING
(01-13-2014 07:36 AM)DeepBreathing Wrote:  If you can tell us what type of machine you have, it will help us give some more specific advice.

This forum has been a big help to me but DeepBreathing is right. You have to provide more information about your machine and mask to get helpful suggestions.
01-13-2014 07:44 AM
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me50 Offline

Advisory Members

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

Other Comments:

Sex: Undisclosed
Location: USA

Post: #4
RE: New User - UGH I'M DYING
(01-13-2014 07:36 AM)DeepBreathing Wrote:  G'day Oppressed, welcome to the forum.

A constant pressure of 18 is really high and I'm not surprised you're having a problem, especially considering your sinus issues.

A couple of thoughts come to mind - first, make use of the ramp feature, to build the pressure up slowly. Second, set the EPR (expiratory pressure relief) to maximum (also called A-flex or similar on some brands). You should have both these features available on your machine. If you can tell us what type of machine you have, it will help us give some more specific advice.

I suspect, however, that you are going to need a different type of machine called a bi-level (VPAP or Bipap). This allows a separate setting for inhale and exhale. I'm not familiar with the insurance requirements in the US, but I have read that if you can't tolerate a straight CPAP machine then you may be entitled to a bilevel.

Hang in there for some more suggestions.

Well, it sounds like nobody is listening to you. I have allergies and issues like yours (not sure they are as bad as yours) and I can think of 2 suggestions and I might think of more when I wake up better.

One suggestion is to use a nasal spray like Patanase. I use this but only as needed and I am able to use a nasal mask rather than a FFM.

The second suggestion is, if you don't have this machine, ask for an Auto Set where they can give you a range of pressures and your pressure isn't at 18 all the time but, at 18 specifically when you need it.

Are you using a humidifier?

A sleep study is one night and maybe they thought you needed pressure 18 that night and they do the best they can with the 5 or 6 hours they have to determine an optimal pressure. That is why the auto set is handy because the possibility of making adjustments to get you the best possible therapy pressure needed to help you be able to handle the machine is available but it isn't with a machine that isn't an auto set.

If this doesn't work then you may need to go to a bilevel but there is criteria that has to be met first and that decision usually won't be made after 4 days of attempting to use the machine.

So, talk to your doctor or go see your doctor and make them listen to your concerns because not being treated can cause a lot of other medical issues for you. AND, call your ENT and ask about Patanase or a similar nasal spray.
(This post was last modified: 01-13-2014 08:58 AM by me50.)
01-13-2014 07:58 AM
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chezdan9 Offline

Preferred Members

Posts: 22
Joined: Dec 2013

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed h5i
CPAP Pressure: 12
CPAP Software: ResScan SleepyHead

Other Comments: diagnosed AHI = 88

Sex: Male
Location: Massachusetts, USA

Post: #5
RE: New User - UGH I'M DYING
Welcome, Oppressed! I am relatively new around here too and I had many of the same problems you are experiencing. I have found this forum extremely helpful 1) because it makes me feel like I'm not the only one going through this and 2) the depth of experience and helpfulness here is reassuring.

I had the same problem with exhalation - I felt like I was being suffocated and I also had a panic attack during my sleep study when they put the cpap on me. To this day, there are certain times that I feel like I cannot exhale against the pressure. Fortunately, I have learned how to cope with it - but unfortunately, I don't have a hard-and-fast rule for you to follow. All I can tell you is that I have learned to relax and take shallower breaths with the mask on. It seems as if the harder I breathe, the more pressure pushes back. To combat this, I take 5 - 10 minutes prior to putting on my mask and I lie down, relax and practice deep slow breathing, concentrating on slowing my pulse and my breathing rate. By the time I get my mask on, I am calmer and breathing more shallowly. The panic is making you breathe harder and deeper, therefore, you are pushing harder against the pressure. Learn to relax and it will seem easier for you. As someone stated in another post - once you get the hang of this, you will wake up in the middle of the night and think your machine is off because you are breathing with no effort and what feels like no resistance - but everything is working normally. It's just that your body has adjusted to the pressure.

I hope that's helpful, not much information, but I think knowing that you are not crazy, or that you are not the only one with these problems is helpful.

...and make sure you give as much info about your machine as possible! Good Luck!
(This post was last modified: 01-13-2014 08:52 AM by chezdan9.)
01-13-2014 08:51 AM
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brianwood619 Offline

Advisory Members

Posts: 171
Joined: Jan 2014

Machine: ResMed S9 VPAP Auto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 16-22cm/h2o
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Peaceful Acres

Post: #6
RE: New User - UGH I'M DYING
The ramp feature was a godsend to me when I started, even though I'm an 11 on pressure it still was hard for me. I used ramp religiously and it took me around two and a half weeks but I finally went from sleeping four hours to right and above on sleep. Stay diligent, I know it's hard but in time it will become easier. I still use ramp every time nowadays and life has changed dramatically for me. I use a full face mask as well.

I wish you all the best. I'm back to being a fully functioning human being because of CPAP therapy.
01-13-2014 01:12 PM
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trish6hundred Offline

Advisory Members

Posts: 6,453
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: New User - UGH I'M DYING
Hi Oppressed,
WELCOME! to the forum.!
I'm sorry you are having trouble with CPAP therapy right now, it can take some getting used to.
Hang in there for more suggestions and best of luck to you.

trish6hundred
01-13-2014 02:54 PM
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ImaSurvivor Offline

Preferred Members-2

Posts: 322
Joined: Nov 2013

Machine: ResMed S9 Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: H5i Heated Humidifier, ClimateLine Tubing
CPAP Pressure: 10
CPAP Software: SleepyHead

Other Comments: Moderate Sleep Apnea, Began using CPAP 11/27/2013

Sex: Female
Location: New York State

Post: #8
RE: New User - UGH I'M DYING
Welcome to the forum Oppressed. I concur with all the posts above. I found too that I felt like I was suffocating to begin with. I made adjustments that were right for me. In my case I had to turn the ramp off but that is an individual decision. I knew from my sleep study that starting me out at the lowest pressure of 4 was a suffocating feeling for me. So when I saw my ramp on my machine was with minimum of 4, I quickly determined it had to be changed. The exhale is something to get used to. I don't deal with a high pressure like you but as chezdan9 mentioned. Concentrating on relaxing and taking even breaths in and even exhales out will help. I can hear myself inhale and exhale and I listen to it and it is kind of soothing to me and takes my mind off that uncomfortable feeling. Your body will adjust and you will become used to it.

Please stick with it. It gets better and it is a life saver. I agree that AutoSet machines are the best way to go. There is flexibility with them. Good luck and keep checking back with us. There are many here that have a lot of experience, and advice. It is comforting to know there are others that have gone through many of the things you are now going through. Members of this forum are very open about their experiences and want to help.
01-13-2014 03:40 PM
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Smoothy Offline

Members

Posts: 7
Joined: Jan 2014

Machine: ResMed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Philips Nuance Pro
Humidifier: H5i
CPAP Pressure: None
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: Greater Cleveland Ohio Area

Post: #9
RE: New User - UGH I'M DYING
I am new to this stuff but I also have sinus issues. I remember when I had my sleep study they came in and put a nasal mask on me in the middle of the night. I tried for a few minutes and told them I could not exhale. She said ok and I said nope not yet. Eventually she got it right and I fell asleep. From what I understand the sleep study indicated a bi-level machine was needed. I researched a bit before accepting delivery and told my doc I wanted and auto VPAP. He resisted a bit (did not like someone telling him what they want I guess) but I was persistent and he said if the insurance will cover it he will prescribe. Turned out is was same code. Anyway with my machine which is a ResMed VPAP auto I have a variable pressure that ranges from a MAX IPAP of 15 and a MIN EPAP of 5. Also from what I understand there are some Ti max and Ti min adjustments that would assist an individual like you and I.

I would probably go in there and discuss this particular machine with him.

ResMed numbers

36006 S9 VPAP Auto
36016 S9 VPAP Auto + H5i
36026 S9 VPAP Auto + H5i + ClimateLine


Enhanced AutoSet™ algorithm makes breathing feel more natural and comfortable
Ultra quiet Easy-Breathe motor
Intuitive menu settings and color LCD display
Seamless integration with optional H5i™ heated humidifier with Climate Control

Hope this helps and good luck
01-13-2014 04:11 PM
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jgjones1972 Offline

Preferred Members-2

Posts: 516
Joined: Nov 2012

Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: ResMed Quattro FX
Humidifier: ResMed H5i
CPAP Pressure: 18 - 20
CPAP Software: ResScan SleepyHead

Other Comments: CMS50I PulseOx

Sex: Male
Location: Ohio - USA

Post: #10
RE: New User - UGH I'M DYING
First thing I would suggest is cranking the humidity way up. That's the only way I can deal with my sinus issues/deviated septum - of course, everyone is different and what works for me won't necessarily work for you; but that's what works for me.

Getting used to pressure at and above 18 takes some time, but it does happen.

As has been suggested; use the ramp function if you have one. Start the ramp pressure low and set it to take the maximum amount of time to ramp up to therapy pressure. If it ramps up too much while you are awake, turn the machine off and start the ramp again.

You would probably be better of with an Auto machine set to a pressure range...probably best served by a bi-level machine if your pressure needs are really as high as prescribed.

I can't help but wonder why they would prescribe a constant pressure of 18 if you never got back to sleep after they put the mask on...sounds like a change of doctor may be in order.

JMHO
01-13-2014 09:00 PM
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