Three months without successful night sleep

[Guest]

I been diagnosed with mod to severe sleep apnea and still having a horrible time getting used to this machine. My original setting was 14-16 but it was too much then went down to 12 couldn't handle that either now down to 10 and still struggling with it that most nights I won't even put it on. The bad thing is I get a bad nights sleep and pay for it in the morning. I been to my sleep doctor twice so far in three months and feel like its a total waste of time to see him because he doesn't advise me at all and says stick with it, come back in two months.I don't know what to do at this point. The funny thing is I fall asleep like a baby when not hooked up but I guess through the night I have episodes, but the second I put on the nasal interface I can't fall asleep and when I do I just yank it off durning the night. I don't know maybe I have the wrong doctor and need to get one who even cares enough to help me come up with a solution.

[birdshell]

From all of the experience of just a bit more than a year of use:

It always seems that there is something wrong when one cannot be compliant.

Either the mask needs to be tweaked using fixes or it isn't even a good choice for you to use.

Maybe the machine isn't the best for you--they are different.

Maybe you DO need a new doctor.


However, there are so many reasons for someone with SDB to remain compliant with xPAP treatment that I hope you will keep trying things and NEVER give up.

Please share your trials with us and any fixes or changes that prove to be solutions for you. Maybe you will save someone else's life by doing so!

[Julie]

Hi, there are a few things that could be making life hard for you. If you don't have a machine with c-flex (a feature that helps adjust exhaling, which can be hard for some people), see if you can switch to one, like the Remstar Auto with C-flex. As well, your mask may just not fit well and apart from being uncomfortable, may be leaking around the edges, or you could be mouth breathing. Some ways of dealing with it would be what's called a full face mask - doesn't cover your face or anything, but does extend to cover your mouth (and if you're mouth breathing and losing air that way you won't know it) - some people do well with them, others not, but it's something to consider. As well, some people use a nasal mask and small strip of 3M micropore tape on their mouths (sounds bad, but actually works very well, often better than a FF mask, which can be hard to fit effectively). There are masks with 'pillows', prongs, and 'cushions' that just rest against your nostrils or just sit slightly inside them, and many people find them very good, especially as they eliminate the whole nasal covering and just work from an extension of the hose pipe (rough description but you get the idea). Again, as with any type of mask, you need to try different ones to see which works for you. And of course you need to try different nasal ones to find a good fit, and you may be quite happy once that's done. Can you also post what kind of machine you're using to make it easier to help you? Are you using a 'ramp' feature to get to sleep BTW? It's a button on some machines that starts you at a lower pressure and gradually rises to your therapeutic one over 10 or 20 mins., making it easier for some people to adjust to Cpap at first (most of us disable the feature after a while). I mentioned the Remstar Auto above (actually made by Respironics and not Resmed) and Auto means the machine, while it's set to basic pressures of 4 all the way to 20, helps you find your ideal setting using the read-out window on it and then you set it to begin a couple of numbers below that, and a few higher, and overnight when you have events of varying length and strength, it adjusts to them. You have a lot of learning to do I think because you should not be having such a hard time. Check the info. under the lightbulb (top of forum pg) and the different masks on Cpap.com to get an idea of what's out there.

[Wistful]

I was in a simailar place as you about two months ago. It helps if you break down the issues one by one and try to fix them, like you did with your pressure. Then it's just a matter of getting used to it. So, if you would like to share the specific things you feel might be hindering you, I',m sure we can try to help.
Wistful

[ddpelp]

What I do not understand is.. if your titration study said you need 14 - 16 then how can you be expected to be helped with cpap machine if they lower you required pressure. What I mean is if you need 14 to keep you airway open then reducing the pressure just to "feel better" seems that it might cause the entire process to fail?
What am I missing?

[Guest]

I have the swift nasal mask and the resmed s8 autoset vantage along with the humidifier. It does have the ramp mode which I use I think its set at six and works its way up to ten within 20 min. or so. The problem last night was it seemed like the air was like a burning sensation inside my nose so I have the ayre gel but didn't work so I just went to sleep without the use of cpap. This feels like such an unnatural act to have a machine to help you breath that I can't seem to get past that way of thinking, sometimes it feels like I am fighting it (the machine). I know how serious this is because I have experienced in my sleep a feeling of trying to wake myself up because my breathing stopped but my body was like paralyzed I could not move my arms legs or body but my brain was trying to wake me up and its seems like just before I go unconsious so to speak I wake up and sit up and gasp for breath, very scary its only happened a handful of times in my life but it actually feels like you are being suffocated or maybe drowning best way to describe it. The other thing is I am usually on my stomach or side which is strange because you usually have problems when people sleep on thir back.

[bdp522]

Do you use a heated humidifier? It may help with the burning sensation in your nose.

Brenda

[Guest]

I have a heated humidifier but thought you shouldn't use it durning summer months. But it makes sense to use it if my nose is dry, thanks I will try that tonight.

[TerryB]

ddpelp,
You are not missing anything. Lowering the pressure below that required to splint the airway is not useful to the user. The high pressure though makes getting with the program more uncomfortable and makes masks more prone to leakage too.

Guest,
Establish a screen name so we can tell you from the other guests.
Since you have an auto, I recommend that you learn how to set up to provide a low pressure to start but go up to the pressure it determines you need.

The humidifier will help with the nose, but may cause water to condense in the hose "rainout" which is a pain.

Good luck to you,

TerryB

[Goofproof]

If you, join the forum, fill out your profile, and let us no how you do things, before two more months of non-treatment pass, maybe the prople here can find a answer that helps you. Now we don't have enough info, except that you aren't finding what works. Jim

A lot of people are set up to fail by their providers.

[ozij]

Guest,
Try to think of this way: the machine is not necessarily there to help you breath - you can do that fine on you own. But it's there to keep you from suffocating.
With Obstructive Sleep Apnea, which is what most of us have, our breathing reflex is fine - we keep trying to breathe, even struggle to breathe all the time. But our airways get obstructed. The machine is there to keep the airways from obstruction.

For some of us, breathing against the pressure is something similar to weight training: you start out at something lower and let in rise gradually. I think that at the beginning, sub-optimal pressure may be better that none.

For me the anxiety of "when will the pressure start to rise and bother me" was so high that the ramp was useless. I had to know that the upper range was near what I can handle before I could fall asleep.

So, in addition to what others have suggested, I would consider the following:
1. Find out if you're troubled by breathing against the pressure, or by not getting enough air. To do that, try the system when you're awake, not ever at bedtime or trying to fall asleep.,
2. Discuss with your doctor the option of a "training period" in which the range - top and bottom will be limited to what you're comfortable with - and raising it gradually.
3. Once you accept the fact that you need the machine to keep you from suffocating, make it clear to the doctor that you're not resisting therapy as such, that you just want time to get used to this.

It seems to me that most of sleep medicine has never understood that for many of us getting used to cpap is a kind of learning/training thing. Originally, apnea was treated by a tracheotomy - you cut the hole once, and the problem is solved. They seem to have stuck to that paradigm: one titration, and off you go. Elephants can be taught to stand on one leg - but it doesn't happen in one go.

I wonder in how may titration nights in sleep labs (SAG, are you reading this?) maximum pressure is reached within 45 minutes of a person getting into bed. As far a I know, the techs start changing the pressure only after you fall asleep.
A ramped machine doesn't know you're still awake after 40 minutes because you haven't gotten used to what one forum member once unforgettably defined as "this new way of sleeping".

Take your time: the machine and mask are your best friends - it will be worth it.

Good luck
O.