I hate this

[erwink]

Had my equipment for a little over a month, and am NOWHERE near adjusted to it.....many problems - can't even put my finger on many of them - went back to dr. and got chinstrap - still having problems.... Now I'm not even using the machine at all because I sleep MUCH better without it....and I don't even want to TRY it again. *sigh* VERY discouraged. Don't know what to do. I really thought based on my sleep study with the machine that it would be a relatively easy adjustment....the reality has been anything but.


I'm ready to give up.

Kim

[apneawho]

Kim,
I understand your discouragement, but you have to use your cpap every night in order to deal with the obstacles. Without consistency you can't identify real problems that need a solution. Some adjustment is to be expected, but you can't adjust if you don't use. You should be able to put your finger on the issues. I have never felt better off cpap than I do on my worst night with it. It can be frustrating, but please remember, you are not getting proper oxygen to your body, down to the smallest cells, to repair and restore your body. I had a stroke before I found out that obstructive sleep apnea was the only likely cause. Now I am happy to wear it and put up with any obstacle that comes my way.
Really need more info to know specifically what you are struggling with. Everyone here is willing to help and offer suggestions and support.

[jnk]

Had my equipment for a little over a month, and am NOWHERE near adjusted to it.....many problems - can't even put my finger on many of them - went back to dr. and got chinstrap - still having problems.... Now I'm not even using the machine at all because I sleep MUCH better without it....and I don't even want to TRY it again. *sigh* VERY discouraged. Don't know what to do. I really thought based on my sleep study with the machine that it would be a relatively easy adjustment....the reality has been anything but.


I'm ready to give up.

Kim

Until you get the mask that is perfect for YOU, the therapy can be difficult to get used to, especially at first.

What we think of as "sleeping better" may not actually be very good sleep. A few hours of PAP-therapy sleep can, for some, be worth several hours of non-PAP-therapy sleep, if we're talking ACTUAL good for the body/brain, not PERCEIVED good for the body/brain.

Squeaky wheel gets grease. Just saying to the DME that you can't make your present mask work should earn you the right to try another, according to all major mask manufacturers. They are aware that mask fit is highly individual; that is why they make so many different ones and will not charge a DME for a mask that a customer brings back within 30 days of trying to make it work.

Don't give up on trying masks until you find the right one for you.


Other than mask, what would you consider to be your number one problem in dealing with the therapy?

[Emilia]

You are using a full face mask, according to your equipment list, so a chinstrap is useless. Your mouth is already covered! I suspect you are having issues with leaks or pressure. Do you use the software for your machine to monitor your overnight therapy? If not, you need to get it... it is free. Once you have data to view, we can help you understand what you are looking at and how to interpret the issues along with remedies to get it right.

Others with your machine will be along to help you access the necessary software, links, demos, etc. Hang in there!

[tattooyu]

Hi Kim. I'm a semi-veteran on here but haven't been on in a while. I have a 17-month old boy that's testing my physical limits, even with the improved sleep I get.

Anyway, the key is perseverance which, given our state when starting CPAP, is easier said than done. Dig deep and muster the energy to do it. You really need to stick with this. Just the other night, I threw my mask across the room, because it was late, I was tired and just didn't want to deal with this shit. But, I did, of course. I would never, ever, ever sleep without my mask. Ever.

Love and Happy Holidays,


-Kenny

[Pugsy]

Still having aerophagia? What pressure do you use? Do you use EPR? If so, at what setting?

Get a different mask to try. Some are easier to manage than others.

[MaxDarkside]

I'm a newbie, been on my machine about 1 month. For me, there's no choice... I do or die. So I do, and find a way to get around the challenges. You can do it. Stick with it. I don't know what your consequences are for not, I do know them for me.

[jnk]

. . . a 17-month old boy . . .

Great shot of the kid, Kenny! How old there?

[tattooyu]

. . . a 17-month old boy . . .

Great shot of the kid, Kenny! How old there?

I think he was about a year there. I've just changed my avatar to a more recent photo of Jonah (orange shirt).

[robysue]

Had my equipment for a little over a month, ...

Now I'm not even using the machine at all because I sleep MUCH better without it....and I don't even want to TRY it again. *sigh* VERY discouraged.

Kim,

You are here because deep down inside you really DO want to try it again and make this crazy therapy work. But ...

CPAP is NOT a part-time therapy. While you subjectively feel that you sleep (much) better without the machine than with it, the reality is you are simply not one of the "lucky ducks" ones who take to this therapy immediately. And one month of PART-TIME use of a CPAP is, unfortunately, nowhere near enough time for many of us to get to fully adjust to sleeping sleeping with a six foot hose on our nose. For those of us who are really unlucky, it can take several months before we start to sleep as well with a CPAP as we subjectively thought we slept without the CPAP. In my case it took close to six months before I started to feel like I was beginning to sleep as well with my PAP machine as I did before I started this crazy therapy.

And since sleeping with a six foot hose attached to your nose is not exactly natural, you are now very frustrated and discouraged at finding out that your learning curve to sleep with a CPAP is much more steep and daunting than you expected it to be.

And since you are choosing to not use the machine every night, you are making your adjustment period even longer and more difficult than it needs to be: Every time you choose to fall asleep without the hose on your nose, you allow your unconscious mind, your conscious mind, and your body to continue to believe that you don't really need to learn how to sleep in a very new and seemingly unnatural fashion---that the "old" way of sleep is just fine. And that makes it even more difficult and even more uncomfortable for you when you do buck up enough courage to try to use the mask again.

So you are now trapped in a vicious cycle: The CPAP makes you uncomfortable even though it takes care of the OSA, so you take the mask off to get more comfortable, so the next time you put the mask on you're even more aware of all the discomforts it causes, so you take it off again, and so on and so forth ...

And there's really only one way out of this cycle: Just wear the mask. Every time you sleep. With No Exceptions.

Had my equipment for a little over a month, and am NOWHERE near adjusted to it.....many problems - can't even put my finger on many of them - went back to dr. and got chinstrap - still having problems (emphasis added)

Until you can put your finger on all of your problems no-one can help you solve the problems: All we (and your doctor) can do is wildly guess what's causing the problems at night when you are actually trying to use the machine. We (and your doc) can throw out ideas (such as "try a chinstrap") that may or may not help because it may or may not actually address any one of your real problems.

Now where to start in trying to put your finger on those numerous pesky problems?

1) In order to start SOLVING your problems with the mask and the machine, you have to IDENTIFY each and every problem and how it affects you and your perceived quality of sleep. You do this by keeping lots of detailed notes. It may help to organize the notes into categories (or not). It may help to organize the notes into a sleep log that you keep for two or three weeks while sleeping with the mask every single night during that time. Things to track might include:

• Basic sleep data that's typically included in an insomnia log like the one found here. Tracking such things as when you go to bed, how long you think it takes you to fall asleep, how many times you woke up, when you woke up for the day, and how much sleep you think you got, can go a long way in determining whether the mask is triggering real insomnia or not. A log such as this may also point out some obvious weaknesses with sleep hygiene that can be contributing to making it more difficult to adjust to sleeping with the machine.
• CPAP things that wake you up at night or that increase your discomfort while trying to get to sleep. You don't need elaborate notes, but you do need notes. "Woke up twice with aerophagia and once with air rushing out of my mouth" is plenty of detail. Notes such as "forehead is tender where the support piece goes" are also useful. Make notes about things such as whether you start sneezing or itching when you put the mask on. Also critical are notes about how it feels to exhale and inhale if you think the CPAP is causing you to "breathe funny" or if you feel as though you are suffocating or you feel as though the machine is rushing you to inhale. Each and every one of these very real sensory phenomena can indicate what part of your therapy might need to be tweaked, and, just as important, how to tweak it. For example, "I feel like I'm suffocating" combined with a long ramp starting at 4cm of pressure can usually be fixed by either turning off the ramp or increasing the initial ramp pressure, but "I can't seem to exhale fully while getting to sleep" may indicate that the ramp time is too short or the initial ramp pressure is too high or both.
• Leaks and evidence of leaks. Track how many times you wake up feeling a leak and where the leak is coming from. (Mask leaking into the eyes? Onto the lips or chin? Is the leak a mouth leak?) Track how often you wake up with a bone-dry mouth (evidence of mouth breathing). Track how often you wake up with significant chapped lips or dry eyes, both of which can result from a mask leak. Since you've got a full data machine look at the leak line: Is it flat or bumpy? How bumpy? Do the bumps correspond with uncomfortable wakes? If so, then you know you've got to work on the leaks even if they're not large enough to affect the quality of your therapy.
• Sensory overload caused by hose issues, mask issues, and/or humidifier issues. Get tangled in the hose whenever you try to move around in bed and that makes you more alert and less able to get to sleep or back to sleep? Tired of waking up with a cold, wet nose due to rainout? Spending too much time in bed worrying about CPAP-related things? Spending too much time in bed fiddling with the hose and mask hoping to find a way to arrange everything so that stuff will be marginally more comfortable? Feeling like you have to sleep in an abnormal position to keep the mask from leaking? Does the airflow make you feel too warm, too cold, too wet, too dry? Does the feel of the hose touching your skin bug you?
• Anxiety issues. These are very real for some folks and must be dealt with. You can try to acclimate yourself to the machine by wearing it in the daytime (far from bedtime) just to get used to the feel of the mask on your face and the air blowing down your airway. If putting all the CPAP stuff together at night leaves you nervous about whether you'll be able to get to sleep or wide awake with dread, then put all the stuff together (including a preliminary mask fit) just before supper time. That way you'll be able to go to bed more quickly and perhaps in a more relaxed fashion. It's also important at the start to remind yourself that you only need to worry about tonight. Focus on making yourself use the machine (all night long) one night at a time.
• Anger issues. It's hard to fall asleep if you are ANGRY at the machine. Letting go of the anger triggered by the OSA diagnosis and its resulting CPAP prescription can be difficult to do for some of us; but until we learn to control that anger it can really play havoc with both our ability to adjust to the machine in particular and our CPAP-sleep in general.

2) As others have noted: Mask comfort is critical for adjustment. So---make a list of all the things that you can't stand about your current mask. Some of them may be true for all masks, but many of them will not be true of all masks. If you've tried more than one mask, make separate lists for mask. Insist on trying a new mask if you think it might help. Try one in a different style if possible.

3) Have you (and your doc) looked at the data from that full efficacy data machine you have? If not, you and your doc are working blind here. While it can be easy to over obsess about the data and the small differences from night to night, looking at the data really helps some of us keep on putting the hose on our nose night after night during difficult transitions: Data that demonstrates that our therapy actually is working can be a powerful motivator to keep on working on making CPAP work. For others, the efficacy data clearly pinpoints that one reason they are still feeling lousy is that the therapy is not yet "effective" in terms of reducing the AHI to sufficiently low levels and that may indicate that the doc needs to authorize a pressure change. Full data machines are also critical in really getting a handle on whether leaks are a HUGE issue, a MEDIUM-sized issue, or a SMALL issue. So, for example, if leaks are really not much of an issue for you, then adding a chinstrap is not going to do a whole lot to make things better and it could make things worse by adding yet another uncomfortable thing on your face at night.

Best of luck on getting back in the game and screwing yourself up enough to start masking up every night (just for tonight!) and actively working on all the very real comfort issues that you need to solve before this crazy therapy will start working for you.

[chunkyfrog]

I second the assertion that it's the mask.
I found the Quattro did not really fit me, and impossible to control leaks, be comfortable, everything important.
You need to get a mask that FITS.
Your DME should have made sure you did at the very beginning;
but you should not let their negligence prevent you from getting treatment that can save your life.
There are dozens of masks out there. At least one should fit you comfortably, not leakily.

[jnk]

. . . a more recent photo . . .

Thanks. Another nice one.

It's good to see you posting.

And I'm glad Kim (erwink) has continued to post about her problems adjusting to the therapy. A lot of us have been there, and we want to do all we can to help.

Sometimes taking it one specific problem at a time can be a good approach. It is just a matter of figuring out where to start and what the biggest obstacle is. Not always easy to do, I admit, but picking one issue to chip away at first can make the process seem less overwhelming sometimes.

[xenablue]

You're not Robinson Crusoe - none of us love, or even like XPAP - but it's way better than the alternative. That is - not waking up to a new morning.

It's been over a year for me and I still don't love CPAP - but I DO love that I'm getting the oxygen my body needs; I DO love that I'm sleeping better, deeper, longer without waking up several times per night.

There are nights I would just like to snuggle under the covers and sleep CPAP-nekkid - but it's not gonna happen.

To overcome your hatred of XPAP, first you have to change your way of thinking about this and accept that this is what YOU MUST DO for yourself. Then you need to find the right mask. Many of us have a whole wardrobe of masks - or have tried a bunch of them - until the 'right' one is found.

This won't be achieved overnight - you have to work a little at it, take control of your own health and therapy and achieve in small steps.

Hang in there - this is the best place on the planet to get support, advice and guidance from awesome people who walk the walk.

Cheers,
xena

[snoringshrink]

Kim,

I join with all the others in encouraging you to keep at it. The obstacles you may have to face without it are not good and I can assure that you may think your sleep is better without it, but you really can't know.

It's very easy to get frustrated with the whole CPAP process. For me, it happens because I want everything to work perfectly right now. However, you've embarked on a process and one that will rely substantially on trial and error. I've been on the hose for three months now and am currently on my third mask. I started with my wife's (Apneawho) spare FX nasal pillows with little luck.

I then tried the GoLite for Men because I liked it in the sleep lab. However, the good results in the lab translated into a lot of leak at home and that mask, too, had to go the way of the world. I'm now using the nasal mask listed on my profile. The leak is much better and my numbers are good, but it is uncomfortable and I seem to have a good bit of nasal congestion. So, probably, I'll be on to option 4 at some point.

The reason I mention this is to remind you that this is a process and needs to be viewed as one. If you (or I, for that matter) start to think of it as a one stop deal, then we're going to be very frustrated and this will be reflected in our compliance.

Hang in there and make sure to share your thoughts, concerns, frustrations, and good moments here on the forum. There are a lot of people here who really want to help.

[jnk]

. . . CPAP-nekkid . . .