newbie struggling 4 months-advice?

[billyc17]

Hello, some brief background info; 47, been waking up 4-8 times a night since March 2012- doctor after doctor after doctor- (1 urologist wanted to remove my prostate even though my psa is 0.5, dear god!!) chronically exhausted, piercing headache each day, in a fog, etc. sleep study was finally suggested, yet i had to do it in "my home" as it was not covered by insurance as i did not meet criteria to go to the lab. i am a physicially fit, work-out freak used to intense training sessions and extended runs-- all of which is too taxing to do given my current chronic fatigue. so i was given the machine to hook up to myself for my home sleep study. i must have slept 2 minutes with all these wires and prongs and pads attached to me, and i nearly strangled my wife and cat at some point with all the equipment in the bed. i took it off after laying there for 5 hours, got my results in a week or so (this is in August 2013) and my AHI was 14 and was d/x'ed with moderate OSA. I don't know how they even got an accurate reading. anyway, i have the R S 1 with humidifier-- have been through 3 different type masks. the full face one is out, the hybrid (liberty?) is out. can't do it. i am keenly aware to the straps, noises, hoses moving, etc--- i am quite comfortable with the nasal pillows/plugs (forget the name but they are most comfortable as i don't feel trapped) but naturally my mouth opens. i have tried chin strap which has made it very constricting, with thoughts of "now i can't open my mouth." i have tried the desensitivity steps/training, but just cannot sleep with this on. i have not fallen asleep once with it. i have just wanted that 1 night when i put it on and the next time i wake up it is about 4 hours later, and i would jump for joy. i recently saw an ent who said i have a rather small jaw and narrow throat- and i do snore and snort when asleep as told to me by my wife and by the sounds on my i-phone when i have recorded myself sleeping. the ent suggested an oral device to forward my lower jaw in an attempt to create larger airway while asleep. i have the fitting done early january. my questions are this to the astute forum members: do i continue with cpap, yet my pattern has been to lay there for 2-3 hours then removing it just to get some fragmented sleep (i also find that after 2-3 hours of just laying there naturally my anxiety is up and it makes sleeping even more difficult) can an oral device help if the throat is quite narrow, and with a narrow throat and small jaw is a cpap ineffective as it is just forcing air into an already narrow space? i have most recently begun sleeping on the couch, forcing myself to try and stay on my side, cpap has been put away as of last week as i am completely at a loss with this. i am tired, cranky, and quite frankly not sure how i get through most days. i would imagine many can relate to that. thank you for you time and any insight

[Pugsy]

Welcome to the forum.

Have you tried simply wearing the mask and machine while watching TV or reading a book with no thought or worry about leaks or even getting to sleep?
Just to get yourself used to the mask and machine?
Chin straps won't prevent mouth opening at all..they are meant to be a gentle reminder to the brain...."don't open mouth".
Instead of trying for perfection right out of the gate..simply work on getting used to the mask and machine and getting to sleep.
Worry about mouth opening later. Gotta get to sleep first before it even matters.

Have you discuss this issue with your doctor? Perhaps something to alleviate the stress or anxiety short term if you and he are in agreement on it?
Not for everyone of course but sometimes there's a time and a place for some relief with various meds.

Can't help much with thoughts on the surgery. It all depends on what your problem is and what they do... and from what I have read and people's experience here who have had various surgeries..not all that positive of they wouldn't be here on a cpap use forum would they?

Can't help much with thoughts on an oral device. Again it depends on your body and which device and what they do. Not many forum member here using oral device only.

Someone will come along and give you more insight into those alternative treatments. I deal mainly with the technical aspects of software and the therapy so I don't have much to draw upon to help with alternative therapies.
AHI of 14...rather mild in the grand scheme of things and you might be a good candidate for the oral device.
The surgery...last resort IMHO and only then if your AHI was much, much higher than it is.

[kteague]

Few thoughts on your post... If your sleep while doing the test was as poor a you think it was, your results may not fully reflect the severity of your apnea when sleeping deeply and in REM. You've got some good suggestions on trying to desensitize to the mask. One thing for sure, you won't get used to it by not wearing it. If you are able to breathe freely through your nose when awake, then maybe once things settle down for you, you could learn to keep your mouth shut at night and can use the nasal pillows style mask that is least offensive to your sensitivities. I was a mouth breather early on and took all kinds of steps to keep my mouth shut. Don't need to do anything any longer - I just at some point was satisfied with the air I was getting through my nose. It's not without hope.

Hope you find a way to make it work for you.

[SleepyToo2]

What pressure have you been asked to try (what pressure is your machine set at)? Do you know if you have a ramp setting - the pressure starts out low, and gradually rises to the diagnosed pressure? If so, what are the settings? Are you using any humidity settings? It is common for auto machines to be set to go from 4 or 5 cm to 20 cm, but at 4 many people, including yours truly, struggle to breathe. It feels like I am suffocating. The higher pressures may feel like a gale. Then you add in the change in pressure from the bottom to the top when an "event" is detected, and sleep is going to be very difficult. You need to explain exactly why you are having so much difficulty with it.

Regarding dental appliances: they may or may not work for you. If you had an AHI on an in-home sleep test, your actual AHI may be higher or lower. Dental appliances tend to work better for people with mild sleep apnea. I have one for travel, but I have no idea how much it reduces my AHI and I have not traveled with my wife to know whether it stops my snoring. What I did find was that it reduced my AHI a bit when I used it together with my CPAP. Then I found that my AHI was too low to be able to detect much of a difference. Also, the TapPap mask became available. As I have a problem with grinding my teeth the dental appliance and the TapPap help that. So now I am using just the TapPap. I still get some wake-ups in the night, but I am not sure if that is because of the apnea or the bruxism or something completely different. Perhaps you could try a boil-and-bite mouth guard together with your xPAP?

Getting use to the machine is not easy, but well worth it when you do figure it all out. Post specific questions, and you will get a gazillion good answers. One of which may be the goldilocks solution for you!

[49er]

Hi billyc17,

As an FYI, I have greatly struggled with pap therapy for months due to not being able to find the right mask and other reasons. Thanks to a good friend, I have recently tried a sleep weaver elan and see definite signs of progress. I can't tell you what a difference it makes to actually look forward to putting on the mask and know I am not going to struggle with it.

Might this be an option for you? It has straps but I still find it very comfortable in spite of being hypersensitive.

Just so you know, I was convinced I was limited to full face masks because of my sinus issues and obviously, that isn't the case. Since I am a mouth breather, I use Nexcare tape to keep my mouth shut and my leaks are great.

And have you looked at the tap pap nasal pillow mask as it doesn't have any straps?

https://www.cpap.com/productpage/tap-pa ... PPAPLaunch

Regarding a dental device, take a look at this study as it gives the various success rates for different AHIs.

https://advancedbrainmonitoring.app.box ... 7pjn8s11y4

Just you know, I was getting weird print when I called it up. So it might be easier to download the PDF file. Usually success rates for Tap Appliance (AHI<5) are best with mild apnea at 75%, moderate at around 60%, and severe around 30 to 40%. But there were some exceptions in certain ranges.

Hope this helps.

49er

Hello, some brief background info; 47, been waking up 4-8 times a night since March 2012- doctor after doctor after doctor- (1 urologist wanted to remove my prostate even though my psa is 0.5, dear god!!) chronically exhausted, piercing headache each day, in a fog, etc. sleep study was finally suggested, yet i had to do it in "my home" as it was not covered by insurance as i did not meet criteria to go to the lab. i am a physicially fit, work-out freak used to intense training sessions and extended runs-- all of which is too taxing to do given my current chronic fatigue. so i was given the machine to hook up to myself for my home sleep study. i must have slept 2 minutes with all these wires and prongs and pads attached to me, and i nearly strangled my wife and cat at some point with all the equipment in the bed. i took it off after laying there for 5 hours, got my results in a week or so (this is in August 2013) and my AHI was 14 and was d/x'ed with moderate OSA. I don't know how they even got an accurate reading. anyway, i have the R S 1 with humidifier-- have been through 3 different type masks. the full face one is out, the hybrid (liberty?) is out. can't do it. i am keenly aware to the straps, noises, hoses moving, etc--- i am quite comfortable with the nasal pillows/plugs (forget the name but they are most comfortable as i don't feel trapped) but naturally my mouth opens. i have tried chin strap which has made it very constricting, with thoughts of "now i can't open my mouth." i have tried the desensitivity steps/training, but just cannot sleep with this on. i have not fallen asleep once with it. i have just wanted that 1 night when i put it on and the next time i wake up it is about 4 hours later, and i would jump for joy. i recently saw an ent who said i have a rather small jaw and narrow throat- and i do snore and snort when asleep as told to me by my wife and by the sounds on my i-phone when i have recorded myself sleeping. the ent suggested an oral device to forward my lower jaw in an attempt to create larger airway while asleep. i have the fitting done early january. my questions are this to the astute forum members: do i continue with cpap, yet my pattern has been to lay there for 2-3 hours then removing it just to get some fragmented sleep (i also find that after 2-3 hours of just laying there naturally my anxiety is up and it makes sleeping even more difficult) can an oral device help if the throat is quite narrow, and with a narrow throat and small jaw is a cpap ineffective as it is just forcing air into an already narrow space? i have most recently begun sleeping on the couch, forcing myself to try and stay on my side, cpap has been put away as of last week as i am completely at a loss with this. i am tired, cranky, and quite frankly not sure how i get through most days. i would imagine many can relate to that. thank you for you time and any insight

[Guest]

Thank you for your prompt insight. will address as much as i can. cpap starting off at 5.0 and the ramp is set up to 13 and it is set to start ramp up after 1/2 hour. humidifier set at 3 and no issues with that. i have not had issues with that pressure (5.0) to start, nor have I felt overwhelmed when pressure increased. have already tried some meds as i know that i have significant anxiety with this, and the anxiety is also towards sleep in general as this will be 2 years of fragmented unnourishing sleep come March. i have taken some heavy duty stuff in an attempt to fall asleep, (md aware of it and supportive) and have just not been able to do it. i like the idea of the chin starp as a "reminder to the brain", instead of my way of thinking that "i can't open my mouth." i have read the studies on the mouth devices and undoubtedly would buy any product at this point that offered a glimmer of hope for a good nights sleep. with the cpap, i just couldn't continue laying in bed with it on and my sleep got worse as after taking it off at 2 or 3am, trying to get some sleep was brutal. after 3 weeks of that i just couldn't do it anymore, and that was with the only comfortble mask (nasal pillow), thus the oral device investigation. i have read that sleep can actually get worse in the beginning so am aware of that. do i start over with the "desensitization?" start again with an hour or 2 at night while reading/tv? prior to bailing it was part of my nightly routine, mask in the bathroom, putting it on after washing up, trying to make it become "natural and associative with sleep." yes, i would feel a little anxiety knowing "you have a hose attached to you now go to sleep," but i was comfortable enough to lay in bed-----but it just hasn't happened and i couldn't afford to keep getting worse sleep than i was already getting. not sure what to do. thannks

[billyc17]

I am sorry--- the last post by "guest" was by me, billyc17. sorry about that.

[95C4]

For what its worth I use an ear plug in each ear, [those soft pliable ones], & really shove them in.
Makes a big difference re desensitizing me to the noise of the machine & lying there listening to the house creak etc in the 'high alert/listening state", I doubt I would drop off so well without them.

Agree with sitting watching TV with mask on just to get used to the 'feel' of it, so it doesn't seem so foreign.

Also, what is your collar size??

Hang in there.

[Lukie]

Before you spend big bucks on a mandible advancement device consider these aspects.

1. When you keep your jaw in an unnatural position for 8 hours you are asking for a bad case of TMJ or pain in your jaw.
2. If you suffer from gastric reflux, you may wake up gagging and choking on reflux and have to rip the device out of your mouth to save your life.
3 If you get a dental device in place of CPAP make sure you have a follow up sleep study to make sure your apneas are controlled or you risk
serious health consequences such as stroke, heart failure, and dementia.

Getting used to CPAP is not easy. Even the people who have "adapted" have bad nights in which they fight with the mask etc.
Some things I have done to make life easier.
1. I bought a hose holder to hole the hose above my head. It helps a lot.
2. I use Remzzz or Quietus mask liners for my full face Quattro Air mask.
3. I use a Pap Pillow which makes life much easier if you are a side sleeper.

Attitude:
I made the decision that I would wear the mask while lying down no matter what happened.
The mask is saving my life and keeping me from stroke, heart failure and dementia. It is my friend.
I read and research everything I can about sleep apnea and its treatment.
I have many horrible nights but they are becoming fewer and fewer as I grit my teeth and just go to sleep and bear it.
Finally I am sleeping in two periods rather than waking up repeatedly and fiddling with the equipment.

[JointPain]

Sometimes my mind is hyper and I can't seem to fall asleep.

So I put some headphones on and listen to an audio book. Something that I find mildly interesting and can engage my mind, but with a fairly deep voiced narrator.

Initially I would 'listen' all night long and I don't really know how long it would take me to fall asleep. (I wasn't trying to use it as a sleep aid.)

Now I fall asleep really quickly. I set the 15 minute sleep timer on the audiobook and most nights am asleep well before then. Sometimes 1-2 minutes (based on what I last remember hearing). I get great value from my audiobooks . Eventually I get too engrossed in the book and it's sleep inducing powers diminish. Then I finish that book (or get past the very interesting bit) and start a new one.

Obviously the physical aspects of your mask need to be comfortable (sounds like they are) and you need a set of headphones that you can sleep in comfortably.