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I have failed with Cpap
#1
I'm sure some of you remember me. I posted here a few times about a year ago. I have severe TMJ and a host of other problems. I live in chronic pain from disc disease and fibromyalgia. I've been to two sleep doctors. I had so much hope with the second one, but lost that when he told me the treatment probably wouldn't work. He told me to come back in a year.i've tried several masks but I tear them off in my sleep. Someone please help. I wake up totally exhausted. Love to all. DJ
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#2
Hi, DJ.

There MUST be something we can come up with for you to try.

It wasn't very nice of the doctor to say it wouldn't help. Going into anything with that in the back of your mind only leads to self-fulfilling prophecies and low expectations--a recipe for failure. My PA told me just the opposite, and I believe him!

Because I am convinced that CPAP therapy is the holy grail for what ails me, I am bound and determined to make it just part of my sleep routine.

I'm new to the world of sleep apnea, but I am VERY familiar with disk disease and fibromyalgia, so I get the whole chronic-pain thing. I wasn't here for your earlier posts; I assume you've tried FFM, nasal pillows...the whole realm of masks, yes?

Do you have ANY clue about why you remove them during the night? Is it the sound? Discomfort? Claustrophobia? Other?

We're here to help--please keep posting 'til we come up with something that might work for you.

Lamb
To all, to each, a fair good-night,
And pleasing dreams, and slumbers light.
Scott—Marmion. L’Envoy. To the Reader.

Diagnosed with OSA September 2014
AHI=18
Lowest SpO2: 79%
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#3
Hey DJ,

I honestly do believe it comes down to 'self-talk' - you own words, "I've failed with CPAP" is a perfect clue. Using a nasal mask or pillows shouldn't interfere with your TMJ, and if you have leaks - better to use the machine with leaks than not at all. First step is to get you to keep a mask on - so, you wear your mask whenever you are home, awake, asleep, whatever - and tell yourself that you need this, that you can't live without it. ETC...

Once you get to a point that you can keep some type of mask on all night, you might then consider what option will help you lessen the leaks.
*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#4
(11-30-2014, 07:25 AM)djjwilly Wrote: I'm sure some of you remember me. I posted here a few times about a year ago. I have severe TMJ and a host of other problems. I live in chronic pain from disc disease and fibromyalgia. I've been to two sleep doctors. I had so much hope with the second one, but lost that when he told me the treatment probably wouldn't work. He told me to come back in a year.i've tried several masks but I tear them off in my sleep. Someone please help. I wake up totally exhausted. Love to all. DJ

long shot here but what you describe is eerily similar to what a good friend of was experiencing. the FM + TMJ issue ended up leading a doctor to diagnose the cause as trigeminal neuralgia--a blood vessel putting pressure on a particular nerve at the base of the head. there is a neurosurgical solution for it that involved wrapping the nerve in a small piece of teflon. he's been pain free ever since. here's the description:

link: neuro.memorialhermann.org/conditions-treatments/trigeminal-neuralgia/


on the mask issue, have you tried nasal pillows instead of a full mask?
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#5
(11-30-2014, 07:25 AM)djjwilly Wrote: I'm sure some of you remember me. I posted here a few times about a year ago. I have severe TMJ and a host of other problems. I live in chronic pain from disc disease and fibromyalgia. I've been to two sleep doctors. I had so much hope with the second one, but lost that when he told me the treatment probably wouldn't work. He told me to come back in a year.i've tried several masks but I tear them off in my sleep. Someone please help. I wake up totally exhausted. Love to all. DJ

All of your symptom could be this:
http://www.tmj.org/site/page?pageId=193

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#6
Hi djjwilly,
First of all, I'm sorry to hear that you are having trouble with using your CPAP mask and machine because of other health problems.
Yes I remember you, and I know you have many problems to get in your way of getting used to the CPAP but, I just encourage you to keep on trying and don't give up. I hope that you keep posting. Hang in there for more ideas.
trish6hundred
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#7
Did you try an Oracle Oral mask?

They're sort of clumsy and uncomfortable to me, but they work quite a bit differently from other masks and may work well for some people who can't make "normal" masks work.
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.
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