Anybody just give up?

[Dssquared]

I hear all of the success stories about CPAP machines but I'm curious. What percentage of people have attempted to use these devices and have just plain given up? I have a Respironics PR System One that I've had about 18 months or so. I've gone back to my sleep doctor several times and given him a compliance report. I've worn the thing maybe a total of a month out of the 18 I've had it. I rip the thing off and launch it across the room if I wear it. It's gathering dust in my closet. To be honest, I'd rather die than try and sleep with this thing. And I've got pretty severe apnea apparently and atrial fibrillation that I've been in the hospital for numerous times. I'm also a pretty severe insomniac, I get about 20-25 hrs of sleep in a week, so I tend to just sit there with this mask on looking at the ceiling until I give up and just get out of bed. The sleep doctor and the CPAP people have proven worthless really. I work in a large cardiology group and they don't really know what to say other than 'try and use it more'.
Would nasal pillows work with this device?
My wife likes the sound of it and the breeze from the mask, but I just lay there blinking lol.
It can't just be me.

[Bill44133]

You need to make this therapy work for you...

Sometime you don't die you just stroke, and then you will have to ask your wife if she will change your diapers... You are playing with fire and you might get burned. Playing around with low oxygen levels when you are sleeping is dangerous.


I wish you well...

[postitnote]

If it's gathering dust in your closet then I guess you are being honest when you say you'd rather die.

Now rethink that and start over. Don't try. Put the mask on and turn on the machine and wear it every night. When you pull it off put it back on again. Keep doing it till you get it down to a science!

Yes you can use nasal pillows. You can also duct tape that mask to your face....

[Wulfman...]

I hear all of the success stories about CPAP machines but I'm curious. What percentage of people have attempted to use these devices and have just plain given up? I have a Respironics PR System One that I've had about 18 months or so. I've gone back to my sleep doctor several times and given him a compliance report. I've worn the thing maybe a total of a month out of the 18 I've had it. I rip the thing off and launch it across the room if I wear it. It's gathering dust in my closet. To be honest, I'd rather die than try and sleep with this thing. And I've got pretty severe apnea apparently and atrial fibrillation that I've been in the hospital for numerous times. I'm also a pretty severe insomniac, I get about 20-25 hrs of sleep in a week, so I tend to just sit there with this mask on looking at the ceiling until I give up and just get out of bed. The sleep doctor and the CPAP people have proven worthless really. I work in a large cardiology group and they don't really know what to say other than 'try and use it more'.
Would nasal pillows work with this device?
My wife likes the sound of it and the breeze from the mask, but I just lay there blinking lol.
It can't just be me.

Welcome to the forum!

As I just posted in another thread, the failure/success rate of this therapy is about 50%.
The "medical mafia machinery" has done a very poor job of helping potential users being successful with their therapy.
They're more interested in the monetary returns of the therapy than the medical benefits.
However, that's why we're here and desperately try to help people such as yourself.
Part of the "success" is for the users to educate themselves as much as possible and to take control of their own therapy. Leaving it up to those same people who diagnosed and provided your equipment is a big "cop out".
NOBODY is going to care as much about YOUR therapy as YOU are. YOU need to take control of it.
Getting pissed-off about it isn't going to help either. You need it and you need to use it. It's that simple.
You obviously found this forum and posted for a reason. Now it's time to "git r done"!

I would strongly recommend filling in your profile with the exact equipment and settings you're using.


Den

.

[SGearhart]

Welcome to the Forum.

There must be a large amount of non-compliant CPAPers. Otherwise the insurance companies wouldn't require compliance reports and a rental period before they sign off on you owning it.

Sorry to hear about your disdain for the CPAP. As far as I know, any mask will fit any xPAP type or brand device. If you decide on a nasal or nasal pillow type design, go on and order a chin strap. They are inexpensive and you'll have it if you find that you're breathing through your mouth.

I know that if it wasn't for the nasal pillow type of mask, my CPAP would now be yard art.

Good luck in your quest.

[Dssquared]

I appreciate the input. Believe me, I understand about the monetary pay off vs. caring medical professionals-I'm in the medical field. I will try the nasal pillows since my masks just tend to irritate, slip, and generally annoy the piss out of me. They fit pretty well but I just yank them off for some reason. I just signed up on this group so I have yet to put my equipment in the profile section but I will do that.
I do want this therapy to work, dying is not something I want to do at this time (although I was electrocuted to death in the military
and revived obviously) and it was
pretty damn relaxing and not bad at all.) I don't fear dying, just stroking out. So, I'll try the nasal pillows. Thanks!

[zoocrewphoto]

Tell us about your equipment. Fill out the profile and include your settings. Also, tell us what kind of problems you are having. Do you feel like you can't get enough air? Too much air t o exhale. Swallowing air? Leaks?

What masks have you tried? Only one? More than one?

We can help you make this more comfortable and more useful. Once you get a really good night of sleep, you will want to do this more.

[OkyDoky]

If you can breathe through your nose and learn not mouth breathe the P10 nasal pillows are very comfortable. Is your machine data capable so you can monitor your leaks?

This link will help you learn how to register your equipment. wiki/index.php/Registering_Equipment_in_User_Profile
If you have a problem finding the right machine look at the numbers on the bottom of the blower after you take out the water, and ask here for help.

Also here is a site with a lot of good info regarding machines and how to download and use Sleepyhead. Check out all the different areas about CPAP use. https://sleep.tnet.com/main

[iCePAP]

I'm sitting at my desk, practicing with my machine and mask that I picked up for the first time today - yes, total newbie. So I guess I'm not really the one to give you any advice. Having said that, I can imagine it drives you nuts if you're not falling asleep (which is bad enough in and of itself) and ALSO have to deal with the therapy. I do have some experience with basic meditation techniques though. A brief course in 'transcendental meditation' (extremely no-nonsense and practical) forty years ago still pays off. Whenever I need to relax and let go, this simple routine really helps. So, even if it won't help you fall asleep, you may find it beneficial in dealing with the frustration. Good luck and keep us posted!

[postitnote]

(although I was electrocuted to death in the military
and revived obviously) and it was
pretty damn relaxing and not bad at all.)

Are you serious about this? You really died? It was relaxing? You knew you were dead?
Did they tell you it was a near death experience or anything? You can PM me if you don't want to tell the details here but please share with me! I lost a child 17 years ago and I always have sought out what people have felt or gone through in your circumstance.

[kteague]

After a few months of trying to use CPAP in 2005 I decided to quit. Felt like the treatment was worse than the condition. Only lasted a few days though. More scared not to use it. You know, there may have been a legitimate but resolvable reason you had such difficulty using the treatment. Found my way here and found out my treatment was not the best it could be and learned about monitoring my data. Tried a few different masks and settled on the the one I could best tolerate. Have changed masks a few times over the years - the quest for nirvana I guess. Was determined to use a nasal pillows style mask. Even though I would mouth breathe when asleep, I was perfectly capable of nose breathing as I did breathe through my nose during the day. Took some months of using various means to keep my chin up and mouth closed (chin straps, tape, dental adhesive, neck brace) but finally succeeded and no longer need assistance devices. Left to the care of my medical providers at that time, I would have stayed a CPAP dropout. Taking responsibility for making it work was one of the best things I ever did for myself. Optimizing your treatment and finding a mask you can tolerate will greatly increase your chance of success. You have a fresh new start. Wishing you the best.

[yaconsult]

Welcome, Dssquared! I can confirm the serious consequences of untreated apnea and I have an implanted defibrillator now.

The connection to the machine is the most difficult and individual part of the therapy. Take a look at the poll I ran here and you can see the distribution across mask types: viewtopic.php?f=1&t=104522&st=0&sk=t&sd=a&hilit=poll

Nasal pillows are currently the most popular choice among people who voted. But all that matters is what works for you. You've got to find something that doesn't leak too much and is comfortable to sleep in.

Whatever it takes, you've got to be using that equipment every time you sleep. The consequences of severe untreated OSA are a lot more serious that just being tired. I lost a very dear friend to a stroke after he stopped using his equipment.

Left untreated, sleep apnea can have serious and life-shortening consequences: high blood pressure, heart disease, stroke, automobile accidents caused by falling asleep at the wheel, diabetes, depression, and other ailments.

People here are willing to share their experience and give advice and answer questions - take advantage of it.

[HanzT]

No, its not just you. It takes a while to get comfortable with the machine that for sure. Then there's finding a mask that works for you without leaking so much you can't sleep, dry your eyes out, getting the humidity settings right, etc. I tried surgery and that lasted about 5 years. Then I got a dental device, but I don't feel that great with it even though I pass the sleep test using it. I'm at the point now that I really only feel comfortable with the cpap. At this time I am even having some sleep issues as my other post shows, but without the machine, I can only imagine how bad I would feel. Finding the right mask is key, then you have to use it for a while, several months, and as you get the settings right and start to get some good sleep, you will start to want the machine. But its that 2-4 months of messing with it that makes or breaks you. That's my experience at least.

[Bill44133]

I appreciate the input. Believe me, I understand about the monetary pay off vs. caring medical professionals-I'm in the medical field. I will try the nasal pillows since my masks just tend to irritate, slip, and generally annoy the piss out of me. They fit pretty well but I just yank them off for some reason. I just signed up on this group so I have yet to put my equipment in the profile section but I will do that.
I do want this therapy to work, dying is not something I want to do at this time (although I was electrocuted to death in the military
and revived obviously) and it was
pretty damn relaxing and not bad at all.) I don't fear dying, just stroking out. So, I'll try the nasal pillows. Thanks!

Glad to read you are going to keep trying... Avoiding a stroke is a good incentive...
But the better incentive is that once you get your therapy optimized how much better you will feel..


I wish you well...

[yaconsult]

(although I was electrocuted to death in the military
and revived obviously) and it was
pretty damn relaxing and not bad at all.)

Are you serious about this? You really died? It was relaxing? You knew you were dead?
Did they tell you it was a near death experience or anything? You can PM me if you don't want to tell the details here but please share with me! I lost a child 17 years ago and I always have sought out what people have felt or gone through in your circumstance.

postitnote: I can speak to this, but I don't want to derail the thread so I'll only make this single comment. I was going to email it but on second thought I realized that others might wonder what the "death experience" was like.

After my open heart surgery to install a plastic aortic valve, in the words of my doctor, "everything that could go wrong, did". One of the results was atrial fibrillation where the heart beats so fast that blood does not get pumped. I was in intensive care after surgery.

So I died, in that my heart stopped supplying blood to my brain and other organs. The effect, as I experienced it, was akin to "fading away". It was like someone turning down a light dimmer switch. Things got dimmer and dimmer. Narrower and narrower. Sounds started fading away - including the damned alarm sound on the heart monitor I was connected to. Everything finally went black. It was very quiet and peaceful. And then they used the electric paddles to shock my heart back into a normal rhythm. At that point you are "back", and it's noisy, and machines are beeping, and people are telling you that it's ok - stay calm, etc.

And then, I faded away again to the sound of urgent voices and orders among the medical staff and that damned alarm! This happened five or six times before they got it under control. I don't remember feeling any of the shocks from the paddles, interestingly. Just lots of faces around the bed all looking down at me.

I often wished that I had stayed dead but you have no control when you are at death's door. And when you try to get them to take you off life support, you just get yet another doctor, this time a psychiatrist, added to your medical team. The hospital bill to the insurance company exceeded $750,000 and this was years ago and included six weeks in intensive care.

This was followed by many months of painful recovery and physical rehabilitation, including learning to walk or even sit up again.

But the dying itself was very peaceful and relaxing. I don't know if this helps, but it's what it was like for me. Dying is easy, living is hard.