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Newbie, so forgive me
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djbryan Offline

Members

Posts: 5
Joined: Mar 2015

Machine: Phillips one
Mask Type: Full face mask
Mask Make & Model: philips respronics
Humidifier: attched
CPAP Pressure: 4 to 9
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #1
Newbie, so forgive me
Hello everyone, I wanted to share my issues with my Cpap, and hopefully figure something out.

I'm not sure of all the terminology, so forgive me. I was diagnosed with Fibromylgia and my Dr. wanted me to go for a sleep study. I went and it was confirmed, I needed a Cpap. I went back a couple of times with a Cpap on and both times, the numbers went backwards and my sleep was pretty bad.

Long story short, various settings, humidities, and several different masks, no improvement. I was basically asked to keep trying it and I could be compliant. I always felt worse using the Cpap. I would get horrible sinus headaches and nasal pain. Once again, I was told to tough it out.

I had ear pain and continued sinus infections while using the unit. Antibiotics, tubes (grommets) and glue ear was a problem with Cpap.

I had to have surgery, a three hour Mastiodectomy from the forced air and spreading infection. I lost much of my hearing as the drilling and removing of my inner bones and replaced with prosthetics.

Sleep Dr wants me to continue, but, I do not want my other ear to get ruined. I do audio for a living. There is a correlation between Cpap and Mastoid. Also, I have not had positive results after months of using and spending money on "upgrades"

Do mouth appliances like Mytap2 or Mytap3 work ok? I need to do something, but Cpap has been a documented failure so far.

Thanks, Sorry, If my tone seems abrasive, I wasn't expecting to lose much of my hearing.
03-28-2015 01:10 AM
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multime Offline

Preferred Members

Posts: 45
Joined: Mar 2015

Machine: Philips respironics system one
Mask Type: Full face mask
Mask Make & Model: resmed quattro fx
Humidifier: part of system one
CPAP Pressure: 8 (repeat study needed)
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #2
RE: Newbie, so forgive me
Maybe others here might have more specific and/or better advice to give you. I think your case might be a complex one like mine is. The only advice I can give you is to trust your instincts. Tell your concerns to your docs and if they don't seem to be bothered by your concerns I'd suggest getting a second opinion. I had to stand up for myself and seek my second opinions and I think this saved my life.

Again trust your gut and don't assume that your docs know everything. Medicine is a vast pool of knowledge that no single person can know. Don't be afraid to seek out more experienced doctors. I called a major sleep study in another state with no insurance coverage and got a doctor willing to listen and he asked for my pcp's phone number. Three days later my PCP called to tell me he talked with him and agreed to try additional testing.

I hope you get this figured out and welcome to the community.
03-28-2015 02:44 AM
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Nyre Offline

Preferred Members

Posts: 46
Joined: Mar 2015

Machine: PR System One REMStar 60 Series BiPAP autoSV Advanced
Mask Type: Full face mask
Mask Make & Model: Resmed Mirage Quattro FX
Humidifier: Builtin
CPAP Pressure: Unsure
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: New Castle, IN

Post: #3
RE: Newbie, so forgive me
(03-28-2015 01:10 AM)djbryan Wrote:  Hello everyone, I wanted to share my issues with my Cpap, and hopefully figure something out.

I'm not sure of all the terminology, so forgive me. I was diagnosed with Fibromylgia and my Dr. wanted me to go for a sleep study. I went and it was confirmed, I needed a Cpap. I went back a couple of times with a Cpap on and both times, the numbers went backwards and my sleep was pretty bad.

Long story short, various settings, humidities, and several different masks, no improvement. I was basically asked to keep trying it and I could be compliant. I always felt worse using the Cpap. I would get horrible sinus headaches and nasal pain. Once again, I was told to tough it out.

I had ear pain and continued sinus infections while using the unit. Antibiotics, tubes (grommets) and glue ear was a problem with Cpap.

I had to have surgery, a three hour Mastiodectomy from the forced air and spreading infection. I lost much of my hearing as the drilling and removing of my inner bones and replaced with prosthetics.

Sleep Dr wants me to continue, but, I do not want my other ear to get ruined. I do audio for a living. There is a correlation between Cpap and Mastoid. Also, I have not had positive results after months of using and spending money on "upgrades"

Do mouth appliances like Mytap2 or Mytap3 work ok? I need to do something, but Cpap has been a documented failure so far.

Thanks, Sorry, If my tone seems abrasive, I wasn't expecting to lose much of my hearing.

I'm sorry to hear your difficulties using the CPAP machine causing issues with your hearing as a Musician myself I would be concerned. I would go seek a second opinion from another Doctor and see what he suggests you do. Welcome to the board you will find a lot of great info and advice is given here.
03-28-2015 04:31 AM
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Moriarty Offline

Advisory Members

Posts: 270
Joined: Jul 2012

Machine: Respironics REMStar 50 Series Auto
Mask Type: Nasal pillows
Mask Make & Model: Fisher & Pakel Pilairo Q
Humidifier: Respironics System One
CPAP Pressure: 8.5-20 (average 9.4)
CPAP Software: SleepyHead

Other Comments: Image above is my CPAP machine...

Sex: Male
Location: Toowoomba - Qld - Australia

Post: #4
RE: Newbie, so forgive me
(03-28-2015 01:10 AM)djbryan Wrote:  Thanks, Sorry, If my tone seems abrasive, I wasn't expecting to lose much of my hearing.

Your outcome is a tragedy and I don't blame you for you concern.

Although CPAP is generally highly effective for the treatment of uncomplicated OSA I for one would not question your call if you were to decide to drop CPAP if your assessment of the risks leads you to that decision after consideration of the pros and cons.

I understood that Fibromyalgia and OSA were separate disorders, although clearly individuals may well suffer both. If an individual has Fibromyalgia then it is possible that a treating physician may believe pain from a sinus infection is a manifestation of the Fibromyalgia... I would hope that is not likely but stranger things have happened. Untreated sinus infections are known to lead to serious complications including infections of the brain. Sinus infections are serious and must be dealt with urgently.

On that basis I have difficulty understanding why CPAP as such should be the culprit. I would be more concerned about the quality of the advice and treatment you received early in your sinus problems. My question would be how did the infection get so rampant?

All that said - I am very wary of the possibility of fungal and/or bacterial contamination of my airways and sinus passages and take great care to keep the humidifier, hose and mask clean. (Not suggesting you don't djbryan - I'm just putting it out there for general information)

Cheers and all the best.

David


p.s. Out of curiosity - what pressures were you prescribed?

Disclaimer: The 'Advisory Member' title is a Forum thing that I cannot change. I am not a doctor and my comments are purely my opinion or quote my personal experience. Regardless of my experience other readers mileage may vary.
(This post was last modified: 03-28-2015 06:43 AM by Moriarty.)
03-28-2015 06:28 AM
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truetopath Offline

Preferred Members-2

Posts: 421
Joined: Feb 2015

Machine: PR system one 560p auto with a flex
Mask Type: Full face mask
Mask Make & Model: Resumed F10
Humidifier: PR system one
CPAP Pressure: 11
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Lake View, NY

Post: #5
RE: Newbie, so forgive me
I'm sorry you're having such a bad experience. I would definitely be seeking a second opinion. Best of luck with your health issues.
03-28-2015 08:21 AM
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trish6hundred Offline

Advisory Members

Posts: 6,446
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: #6
RE: Newbie, so forgive me
Hi djbryan,
WELCOME! to the forum.!
I'm sorry you have had such a terrible time with CPAP therapy.
I would get a second opinion about your situation.
Much success to you in getting your problems taken care of.

trish6hundred
03-28-2015 08:21 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: #7
RE: Newbie, so forgive me
Welcome

The FIRST thing that I would do is to get a COMPLETE copy of your sleep study results with the data points. If it doesn't make sense to you, you can post it here (please make sure to not post your personal information like your full name, address, etc.) and we can help you.

Secondly, I would use find out of your machine provides data to show what happens while you are sleeping. If it does, other than compliance hours, download SleepyHead (it is free) and look to see what happens while you are sleeping. Again, if you need help with this, we can help you if you post the information (graphs and/or stats). Your pressure is pretty low.

It is possible that you need a different machine. Lets see what all of your sleep studies show. Again, if you don't have the copy of your results, all of them, then get them. You are entitled to them.

Those are good places to start and lets see if we can help you figure this out.

At this point, I would be looking for a doctor that will listen to you, one that has some experience with sleep disorders. In the meantime, we can try to help you out if you can provide a little more info


(03-28-2015 01:10 AM)djbryan Wrote:  Hello everyone, I wanted to share my issues with my Cpap, and hopefully figure something out.

I'm not sure of all the terminology, so forgive me. I was diagnosed with Fibromylgia and my Dr. wanted me to go for a sleep study. I went and it was confirmed, I needed a Cpap. I went back a couple of times with a Cpap on and both times, the numbers went backwards and my sleep was pretty bad.

Long story short, various settings, humidities, and several different masks, no improvement. I was basically asked to keep trying it and I could be compliant. I always felt worse using the Cpap. I would get horrible sinus headaches and nasal pain. Once again, I was told to tough it out.

I had ear pain and continued sinus infections while using the unit. Antibiotics, tubes (grommets) and glue ear was a problem with Cpap.

I had to have surgery, a three hour Mastiodectomy from the forced air and spreading infection. I lost much of my hearing as the drilling and removing of my inner bones and replaced with prosthetics.

Sleep Dr wants me to continue, but, I do not want my other ear to get ruined. I do audio for a living. There is a correlation between Cpap and Mastoid. Also, I have not had positive results after months of using and spending money on "upgrades"

Do mouth appliances like Mytap2 or Mytap3 work ok? I need to do something, but Cpap has been a documented failure so far.

Thanks, Sorry, If my tone seems abrasive, I wasn't expecting to lose much of my hearing.
(This post was last modified: 03-28-2015 09:28 AM by me50.)
03-28-2015 09:24 AM
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archangle Offline
Wiki Editor
Advisory Members

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: #8
RE: Newbie, so forgive me
Which Philips Respironics PRS1 machine do you have?

Take out the water tank, turn the machine over and look for this label:

[Image: PR-model-1.jpg]

Unfortunately, the medical mafia tends to dispense one-size-fits-all assembly line medicine these days. If you want to have your CPAP work right, you've got to manage it yourself.

If you learn how to check your own results and adjust your own pressure, you can get the best adjustment to your CPAP therapy you can have.

The alternatives to CPAP border on quackery in my opinion, but might help some. Be REALLY careful if someone suggests surgery. There are a lot of horror stories. A lot of people have no big problems, but little or no relief. Even the "success" stories often wear off and find they need CPAP again in a few years.

Oral appliances are very often ineffective, but help some people. Like surgery, many of the salesmen claim great "success" rates, but their definition of "success" is very suspect. It's often something like 50% reduction in AHI, but you still need CPAP. Some people develop TMJ problems with oral appliances. However, for most people, the only long term harm is to their wallet. They can be really expensive.

There are a lot of sleazy doctors and other snake oil salesmen pushing oral appliances.

Avoiding back sleep helps some people somewhat. Sleeping in a recliner helps some people, too. Not nearly as good as CPAP, but easy to try, cheap, and harmless.

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.
(This post was last modified: 03-28-2015 09:54 AM by archangle.)
03-28-2015 09:53 AM
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retired_guy Offline

Preferred Members-2

Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #9
RE: Newbie, so forgive me
Bryan, your story is, well, yucky!

But to make sense of it all from our perspective there is much that we don't know.

What model machine are you using? (as Arch has asked)

What were/are the pressure settings?

What results were/are you getting? (ahi, makeup of events --- OA, CA, Hypop)

What mask are you using?

Is it fitted properly? (if too tight, that alone could cause serious problems as you are describing)

Do you use a chinstrap? (same thing with the chinstrap)

I know you're doing the best you can to understand and cope with what's going on, but if you can hang in there for awhile we and your enlightened medical team (yeah, maybe) might be able to help you.
03-28-2015 10:56 AM
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archangle Offline
Wiki Editor
Advisory Members

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: #10
RE: Newbie, so forgive me
If you get an Oracle Oral mask, and learn to use it without the nose plugs, there will be no pressure in the ears. There's more description in the Useful Links in my signature line at the bottom of this post.

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.
03-28-2015 02:59 PM
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