CPAP Newbie - Great Start - 1 Month in Sleeping Problems

[gwydionblack]

Hi all. First off I want to introduce myself. I have been lurking around this forum for the past two months or so since I have been diagnosed with sleep apnea, first to just get a feel for what it was like and the hardships I might face, and now to help iron out some problems I have been having since being on my machine for a little over a month now. So here goes.

I started at the beginning of last month at a pressure of 14 with a ramp of 30 minutes, temperature at 72. For the first few night it was understandably rough, but after a few nights I got used to it and I started feeling pretty good with it. So I had my two week followup, everything seemed great with the stats, got my pressure lowered to 12, ramp raised to 45 minutes, went from there.

A week after that I started experiencing leaks in my mask. It then got to the point that no matter how tight I had my mask (then an XL Nasal Mask) I would always experience leaks into my eye at full pressure. I dealt with it, trying novel methods to try to get it to stop, and at last I did but it was very tight on my head. Then, about a week ago, I started waking up almost exactly 2 hours after falling asleep with my mask on and I was unable to get to sleep again without taking it off. No matter how much I tossed and turned and struggled, it just wouldn't happen. This continued until my next followup which was Monday, where I addressed the leaky mask.

Turns out my mask was ridiculously too big for me. I was in size XL when I should be a S/M. Not exactly sure how that got screwed up, but in the end we agreed that with my mouth breathing (I also wore a chin strap with the nasal mask), it would be best to move to a full face mask and do a refitting to make sure we got my right size this time. So I got a new masked, tried it for a good 15 minutes, felt very comfortable in it, and took it home.

Now the last three nights, despite being more comfortable in the mask than I have ever felt, the waking continues. Almost exactly two hours after I put it on I am awake and if I don't take it off I will not fall back to sleep. The first night I tried, I literally rolled around in bed for 3-4 hours until I got so frustrated with it. And now these last three days I have felt worse that I have ever felt before being diagnosed with apnea. Last night I even tried an Ambien I had left over - no avail. I still woke up and rolled around until I took the mask off 30 minutes later.



I had so much energy the second week that the treatment was actually working, I actually started a work out regime and I lost 15 pounds. But ever since then it has been nothing but problems. I'm hoping I can get it resolved and get the treatment I know I need, but at this rate I just feel this is going farther and farther downhill.

Thanks for any help or advice that anyone might be able to offer.

-Dustin

[Papit]

Sometimes when we try too hard, our extra effort becomes counterproductive. I would get up and out of bed during awake periods at night that last more than 10 or 15 minutes, walk around for ten minutes or whatever, read something or watch the tube, etc., nothing too exciting.

About your tightening your masks in response to leaks, go the other way. Most of us (like ALL of us I think) have learned that making the straps "slightly snug, not too tight and not too loose," works the best because it allows the design of the seals to work properly. Over-tightening the straps literally crushes the dickens out of the seals and mask components -- and presses too hard on your face, leaves marks, causes discomfort and interferes with one's ability to sleep.

Lighen up all around and everything should get much better for you. All the best.

[macewa]

Well, when I loosen my straps my leaks explode! so what you say is not always true. When I went in on Monday and saw the DME so she could see how my mask fit it turns out the straps were too large. Now I have smaller straps but still have some pretty big leaks and keeping them loose doesn't help. Oh I wish loosening them up make it work better. But then, my mask is known for leaks.

Sometimes when we try too hard, our extra effort becomes counterproductive. I would get up and out of bed during awake periods at night that last more than 10 or 15 minutes, walk around for ten minutes or whatever, read something or watch the tube, etc., nothing too exciting.

About your tightening your masks in response to leaks, go the other way. Most of us (like ALL of us I think) have learned that making the straps "slightly snug, not too tight and not too loose," works the best because it allows the design of the seals to work properly. Over-tightening the straps literally crushes the dickens out of the seals and mask components -- and presses too hard on your face, leaves marks, causes discomfort and interferes with one's ability to sleep.

Lighen up all around and everything should get much better for you. All the best.

[Pugsy]

Sounds like you are developing some sleep maintenance insomnia.
It's a tough monster to tame and you can't expect the energy to return till you do and you can sleep through the night with the mask on.

One of the other forum members has had a lengthy battle with the insomnia monster.
Might want to read her blog and I bet she will come along later and offer some ideas.
http://adventures-in-hosehead-land.blog ... er_19.html

[robysue]

Then, about a week ago, I started waking up almost exactly 2 hours after falling asleep with my mask on and I was unable to get to sleep again without taking it off. No matter how much I tossed and turned and struggled, it just wouldn't happen. This continued until my next followup which was Monday, where I addressed the leaky mask.

...

Now the last three nights, despite being more comfortable in the mask than I have ever felt, the waking continues. Almost exactly two hours after I put it on I am awake and if I don't take it off I will not fall back to sleep. The first night I tried, I literally rolled around in bed for 3-4 hours until I got so frustrated with it. And now these last three days I have felt worse that I have ever felt before being diagnosed with apnea. Last night I even tried an Ambien I had left over - no avail. I still woke up and rolled around until I took the mask off 30 minutes later.

There's a part of your unconscious mind that is using this recurring wake-up to get its way: It wakes you up and keeps you awake until you give into its desire to take the mask off and go to sleep without it.

You need to break this bad habit before it becomes too entrenched.

Now I'll be honest: For the short term, you'll probably continue waking up at that two hour mark. (It might have something to do with waking up after a REM cycle ends.)

But you absolutely must change your strategy for dealing with that wake. Tossing and turning in bed for 3--4 hours is frustrating and it's likely feeding a little baby insomnia monster. A basic tip from standard sleep hygiene for insomniacs is this: If you've tried for 30 minutes or so to get back to sleep without any success, you need to get out of bed, go to a different room, and do something that's relaxing, soothing, and calming. Only go back to bed when you feel calm enough and sleepy enough to mask up and try, try again.

And if you don't get to sleep in another 30 minutes, get out of bed again.And if you get angry, upset, or anxious before the 30 minutes are up, then get out of bed immediately. You can't get back to sleep if you're angry, upset, or too anxious. Leave the bedroom, work out the anger or settle yourself down, and then return to bed when you're ready to mask up again.

And another thing to keep in mind: Do NOT use a clock to measure those 30 minutes. Estimate it in your mind. Looking at the clock will more than likely feed that baby insomnia monster.

Yes, for the first several nights, you might need to repeat this cycle several time before you'll finally fall asleep. But it will get easier as the nights go on and that stubborn part of your unconsciousness learns that you aren't going to give into it when you wake up after that first REM cycle. And when that finally happens, you may continue to wake at this point in the night, but you'll be able to turn over and go back to sleep in less than 5 minutes. And at that point, it will no longer be so disturbing to your overall sleep.

I had so much energy the second week that the treatment was actually working, I actually started a work out regime and I lost 15 pounds. But ever since then it has been nothing but problems. I'm hoping I can get it resolved and get the treatment I know I need, but at this rate I just feel this is going farther and farther downhill.

Did you mention the nightly wakes with the mask removal at your last doctor visit? Was the focus mainly on "fix the mask issues" with the hope that finally getting an appropriate sized mask would fix the insomnia?

Now that you have a correct sized mask and the insomnia is not resolving itself, you to should report the insomnia to the doc's office. Be sure to stress that you need to work on both the insomnia and any remaining CPAP problems simultaneously. And since you've tried Ambien without any luck, be sure to point out that it did not help. (It's not really a surprise to me that the Ambien wasn't effective---it is primarily designed to help deal with sleep onset insomnia, and it doesn't do that much to keep you asleep for the rest of the night.)

[jweeks]

Dustin,

So, you are one of those dreaded "mouth breathers". It seems like once you get that label, they try to stick you with full face masks for the rest of your tour of duty here on planet Earth. I went through the same thing. At a pressure level of 14, it gets pretty difficult to get any mask to cooperate. One trick is to not use the ramp. If you use ramp, you end up adjusting your mask on the lower pressure, then it blows out later when you get to the higher pressure. If you avoid the ramp, then you start off right away at full pressure. The pressure might feel overwhelming at first, but after a while, you won't even notice it. For example, within 6 months, I was no longer able to tell if my machine was working or not when I was using it other than the noise it makes.

A better solution might be to look for a mask that is easier to live with. I have tried over a dozen masks, including nasal masks, full face, hybrid, and nasal pillows. The only one that works for me is the Swift LT. I started with the Quatro, but I concluded that it is a torture device. I run at a pressure of 20, so I had to ratchet that down so tight that it left blisters. In contrast, the Swift LT is so light that I hardly even notice it. Others use the Swift FX, which is even lighter, and there are a number of other newer pillow masks on the market.

The trick with using a nasal pillow mask is keeping air from exiting your mouth. I found a really good chinstrap that is comfortable and actually works. It is called the Topaz or the Pursome Ruby. That might help you out. If you still have mouth leaks, consider one of the more aggressive solutions, such as taping (which I do despite how odd of a thing it might sound like).

I am not going to promise that what I do will work for you. Rather, my point is that there is probably a better mask solution out there. The problem is that you might have to go through a number of masks to get there. At $75 to $150 a pop, that can be costly. However, good sleep is worth the price.

I'll second RobySue's advice on dealing with wake-ups. My personal rule is that if I am awake a noticeable amount of time, I get up. My favorite thing to do when this happens is to watch music videos or concert films. I generally get tired again within 30 or 45 minutes, and it is then pretty easy for me to fall back asleep. Whatever you do, don't stare into a bright light, don't use a computer, and don't check your cell phone. The light and the mental activity will wake up your brain and you will have a far more difficult time getting back to sleep.

-john-

[gwydionblack]

Thanks for all the quick responses so far. I don't have time to respond to each individual as it is late and I am probably heading to bed, but I will take each bit of advice in turn.

For tonight, if I do wake up, I will definitely take the advice of finding something to do before trying to go back to sleep, that is if I can't like usual. I've had real problems with sleep onset insomnia in my past that I've recovered from for quite some time, and I do not want to revisit that beast in any way if I can help it.

One thing I did notice in both masks I had is that I hate the pressure on my forehead. For now I use a folded piece of gauze to alleviate it, but I did order a Pad A Cheek pad today since everyone on the net seems to speak so highly of them. As far as trying out new masks, I don't really have the funds or options to do that at the time, but hopefully in the future I will have the ability to find the perfect fit for me.

[cjc]

I know it sounds stupidly simple but do you clean the mask each night ?

I know that I took this for granted at the start of my trials and then found the fact that my skin oils were left on the mask made it terrible for leaks (I use a full face mask too). Got up, cleaned it with some water, dried it and it was 100 times better. Just a thought

[gwydionblack]

I wish I could say that I did any better last night, but I failed as well.

I woke up as usual, took the mask off almost immediately and thought to myself, "Well, I will just lay here a second before I put it back on." Fell back to sleep immediately and slept through until morning. Still feel terrible though, that is for sure.

Yes I do clean my mask. I've even made a habit of wiping the mask and my face down with alcohol prior to bed to make sure it is very clean. I guess I will have to try again tonight.

[Cuda]

You wipe down your mask and face with alcohol? Stop doing that!

1) Get a new mask cushion as the alcohol may have damaged the one you have.

2) Always wash your face before bedtime but I would use a facial soap, not alcohol.

3) Consider a cloth mask liner to go over your silicone mask cushion. These work fantastic and saved me from abandoning cpap altogether. Another positive is it keeps the facial oils off the actual silicone mask. I almost never wash the actual silicone mask cushion because it never gets dirty. Instead the cloth mask liner does and you wash that every few days or if you wash your face before bedtime maybe every week or two in warm water and a little laundry soap and hang to dry. It seals better, feels better, saves cleaning time and lengthens the life of the silicone mask cushion. They run about 15-20 bucks from "pad-a-cheek". Its a mom and pop business but a good one, I have had no problems with several orders. They also sell a mid-strap for the Quattro that may help. Give them a call.

4) Straps get stretched. Instead of always clamping down more and more try washing your headgear and starting over each night as if the equipment is new until you get that seal again.

I would say number 3 will change how you view and use cpap, it did for me. Without a cloth mask liner I would have given up.

[gwydionblack]

The only harmful effects that alcohol has on your skin is drying it out. I do not have an issue with that. It is one of the best cleanser of pores and for getting all the oils off of your skin. And as far as I am aware it doesn't do anything to silicone.

And I don't clean my mask every night, nor do I only wash my face with alcohol. I wash my face normally as well, with soap and water, as well as the mask on a regular basis. The alcohol has done no damage, nor is it doing any damage to my mask cushion.

I already ordered a forehead pad from Pad a Cheek so I will try that first and foremost and see what happens.

[robysue]

I woke up as usual, took the mask off almost immediately and thought to myself, "Well, I will just lay here a second before I put it back on." Fell back to sleep immediately and slept through until morning. Still feel terrible though, that is for sure.

You absolutely must break yourself of the habit of taking the mask off and falling back to sleep. There are many reasons you still feel terrible today, but the most important of those reasons is that you slept most of the night with untreated OSA. So you subjected yourself to all the "death of a thousand cuts" yet again.

Just for tonight try what I've suggested: If you cannot stand to have the mask on your nose for one more second, then force yourself to get out of bed. In other words, you need to enforce a basic rule of PAPing: No lying in bed when you're sleepy if you are NOT masked up.

That's the only way to NOT reward the stubborn part(s) of your unconscious/conscious mind that still wants to believe you don't need to find a way to sleep with a six foot hose attached to your nose. This part of your mind is behaving like a two-year old throwing a tantrum: And by taking the mask off and returning to sleep, you are rewarding the "let's wake up and not go back to sleep until the mask comes off" tantrum. The only way to stop this is to be the grownup and firmly and persistently tell the "two-year old" inhabiting this part of your mind, "No, you may not have what you want."